Leadership Interviews – 3 Questions – Focus on Nursing Educators’ Roles in the Future of Nursing

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

Nursing Educators’ Roles in Shaping the Future

In 2010, the Institute of Medicine (IOM) released its landmark report, The Future of Nursing: Leading Change, Advancing Health, which challenged nurses in this rapidly changing health care environment. The Robert Wood Johnson Foundation (RWJF) in partnership with AARP launched a widely executed Campaign for Action carried out at the national and state levels. Now, five years later, the RWJF asked the IOM to convene a committee and examine changes that have been a direct result within nursing and those concurrent changes in health care such as the Affordable Care Act that have impacted the Campaign and other stakeholders to implement the recommendations of the IOM Report.

IOM Update CoverThis Fall (2016), the Nursing Section of the New York Academy of Medicine (NYAM) is planning to host a meeting that will bring together participants from the 2010 Future of Nursing Report and the recent report update (Assessing Progress on the IOM Future of Nursing Report, December 2015) to discuss how well we have done after five years.

The findings of the new report are a commendation on the progress that the nursing profession has made and a call for action on several fronts, including nursing education. According to the update, the Campaign has made significant progress in “galvanizing the nursing community” and “meeting or exceeding expectations in many areas.” They recommend, however, engaging a broader network of stakeholders in several areas including nursing education.

As co-chair of the Nursing Section of NYAM and editor of NURSING ECONOMIC$, Donna Nickitas has written and spoken to wide audiences on the important role of nurse educators in the preparation of a nursing workforce that is agile and ready for a changing health care system. She views nurse educators as stakeholders on the front line with the moral imperative to self-reflect on how to best optimize the years that students spend in their preparation to serve as the next generation of nurses.

We interviewed Dr. Nickitas about why she sees nurse educators to be central to the IOM FUTURE OF NURSING REPORT UPDATE recommendations directly and indirectly through the students they prepare.

New Book CoverDonna M. Nickitas, is Professor and Executive Officer of the Nursing PhD Program at the CUNY Graduate Center. She is also the Editor of NURSING ECONOMIC$. Dr. Nickitas has been an outspoken leader in nursing education, receiving numerous awards and citations for her works including the recent NLN Mary Adelaide Nutting Award for Outstanding Teaching or Leadership in Nursing Education, where she spoke passionately at the National League for Nursing (NLN) Summit on the pivotal roles that all educators play in shaping the future of nursing and impacting the future of health care. Dr. Nickitas is also the co-author of the widely used text book POLICY AND POLITICS FOR NURSES AND OTHER HEALTH PROFESSIONALS: ADVOCACY AND ACTION, published by Jones & Bartlett.



We asked her to elaborate on her comments in the NLN Mary Adelaide Nutting address by answering 3 Questions!

Veronica D. Feeg, PhD, RN, FAAN

We invite commentary that is thoughtful and provocative! Join the online dialogue!


Donna Nickitas

Donna M. Nickitas, PhD, RN, NEA-BC, CNE, FAAN

Professor and Executive Officer

The Graduate Center, City University of New York (CUNY)

Professor, Hunter Bellevue School of Nursing, Hunter College


Question 1. According to the IOM Report Assessing Progress on the Institute of Medicine Report, the committee reported that the nursing profession has made a wide-reaching progress by providing quality, patient-centered, accessible, and affordable care in many aspects of its work although specific areas will require more focus and attention. You have written often the daunting responsibility that nurse educators have in preparing a workforce that is agile and ready for a changing health care system. Why do you believe nurse educators are called to the task?

They’re the lynchpin, nurse educators, because each and every day they enter their classrooms across this country where they apply their knowledge, their skills, their attributes to directly influence the future of nursing! They’re charged with producing a competent practitioner who must meet professional standards, understand Nursing’s Ethical Code of Conduct, but more importantly, make a promise to serve society. This is an enormous responsibility and we must insure that all of our students receive a quality education that prepares them to serve settings in which they will practice.

Question 2. What contributes to a quality education in these times and how do we measure the impact?

Well I think the equation for measurement is really understanding that to build a highly skilled nursing workforce, we have to teach others to become nurses. That’s what we do as nurse educators: we teach others to become nurses. But in doing that, we have to recognize that if we do it well, we get a better educated nurse that translates to better health outcomes at lower cost.
It’s all about quality. It’s about the ability of the nurse educator to directly influence his or her students. How do we track that influence? That’s harder? How do we count the ways we make the difference knowing that we touch students so that students can go on and touch and transform the lives of those they care for? That’s hard, but I think the way that we can understand that is to know it’s not about how many students we touch but rather about our capacity to influence those that we are directly involved with – those that we are educating.

So, we recognize that they have the power to influence their practice by taking the knowledge, the theory and the attributes of nursing, applying that in ways that transform their places where they will be employed; also, being able to influence policy and advocate ways to improve the health and well-being society. An awesome responsibility! A tall order! But in education, we use what we have at hand. We take our innovative teaching strategies, our use of health information technology, our way of integrating scholarship and practice, nurturing partnerships among professionals and within communities, and we foster nurses to become global citizens who care deeply and passionately about the community they serve.

Question 3. How and where do we do this as educators in a changing world?

I think it’s simple. I think the answer is wherever we are – whether it’s in an urban, rural, suburban community across America, nurses must be familiar and insightful about their community, assess that community, and find the evidence that is most meaningful and appropriate to care for those populations that they are directly involved in.  Simply, they must be champions of improving the outcomes of the health care experience for their individual patients – the families – the communities – and the populations in which they serve. And that means really understanding how to improve health care – understanding the culture of health. And when you do that, and you have those outcomes, you reduce cost because people access the care that they need.

When it goes back to then the role of the educator, what they need to do is they have to make sure that they created an educational infrastructure that includes the knowledge that’s required of them, but that often is changing in this society! Whether it’s regulatory, legislative, or local or regional standards of care, we have to know all about it! So it’s not just content per se, but it’s also knowing the demographics, knowing the disease prevalence, knowing about the conditions of the community (the health, the water, the infrastructure, the sanitation, the infectious diseases). It’s the work of Nightingale! It’s the work of knowing the data and how you make a difference with that data.

So what we are looking for is our ability to be excited about the work of the Future of Nursing Report and its update, but we have to be ready to make the changes when needed, to understand the role that we have as nurses (which is so powerful) and be able to influence our students so that they can go and influence the world that they are now a part of.

Leadership Interviews – “3 Questions” – Genomics, Precision Medicine and Advance Nursing Practice

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

Genetics Expert Panel Call to Action

The promise of incorporating new and evolving technologies has resulted from the increased knowledge in genetics and genomics, and the focus of treatment in health care related to personalized medicine. Nurses, particularly advance practice registered nurses (APRNs), are challenged to engage in interventions that incorporate genomics into all aspects of patient care. The fields of pharmacogenetics (the study of genetic influence on both pharmacokinetics and pharmacodynamics), are new areas of importance for APRNs to understand the variability of patients’ drug responses that may be a function of underlying biology. As nurses are essential members of the interdisciplinary health care team, their roles will involve patient and family education regarding the individualized treatments and how future advances in genomics may guide and impact decision making and self-management choices for them. Members of the Genetics Expert Panel of the American Academy of Nursing (AAN), in a recent article published in Nursing Outlook, discuss opportunities for action to increase APRN research contributions toward improving genomic health for the public.

Dr. Janet Williams and her co-authors (M. Katapodi, A. Starkweather, L. Badzek, A. Cashion, B. Coleman, M. Fu, D. Lyon, M. Weaver, and K. Hickey) recently published “Genetics Expert Panel Call to Action” in Nursing Outlook, describing the integration of genomics in health care. They called for four critical areas for action,  including: (1) bolstering genomic-focused APRN practice, research and education efforts; (2) deriving new knowledge about disease biology, risk assessment, treatment efficacy, drug safety, and self-management; (3) improving use of resources and systems that combine genomic information with other health care data; and (4) advocating for patient and family benefits and equitable access to genomic health care resources. The article concludes with a set of policy recommendations in this new era of personalized medicine based on the announcement of the United States Precision Medicine Initiative and the new efforts launched by the National Institutes of Health on Precision Medicine.

The U.S. Precision Medicine Initiative (PMI) aims at finding the right treatment for the right patient at the right time. President Obama’s “Precision Medicine Initiative (PMI),” was launched with a $215 million investment in the President’s 2016 Budget to pioneer patient-powered research and therapies designed as tailored treatments based on genomics for cancer and other diseases. “Through advances in research, technology and policies that empower patients, the PMI will enable a new era of medicine in which researchers, providers and patients work together to develop individualized care” is part of the $130 million NIH cohort program to build a national, large-scale research participant group, called a cohort, and $70 million allocated to the National Cancer Institute to lead efforts in cancer genomics as part of PMI for Oncology.

We interviewed Dr. Williams to discuss the relevance of this paradigm shift that has broadened all aspects of health care and how it affects nursing, especially advance practice nurses. In the interview, she addresses some of the practical questions that nurses might ask to begin their understanding of genomics and how the personalized medicine and the Precision Medicine Initiative may impact on care.

Janet K. Williams, Professor of Nursing, is a Genetics Nurse Specialist and is a PNP and a Genetic Counselor. She is the Chair of the University of Iowa Behavioral and Social Science Institutional Review Board. She directed the Clinical Genetics Nursing Research Postdoctoral Fellowship program, funded by the National Institute of Nursing Research (NINR). Her research has been funded by institutional grants, NINR, NHGRI, HRSA, and the  CHDI Foundation. Dr. Williams conducts research on day to day function in people with prodromal Huntington disease, family caregiving by adults and adolescents for persons with Huntington disease, and ethical issues in disclosure of secondary findings from genomic analysis in clinical and research settings. She is the past president of the International Society of Nurses in Genetics and is a consultant on national and international projects to promote research, education, and practice of nurses regarding genetics.

Dr. Williams is also the American Academy of Nursing’s (AAN) representative to the Institute of Medicine’s Roundtable on Translating Genomic-Based Research for Health. We asked her to elaborate on her recent article by answering 3 Questions!

Veronica D. Feeg, PhD, RN, FAAN

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Janet Williams




Janet K. Williams, PhD, FAAN, PNP, RN, Professor, University of Iowa



Question 1.  Why are genetics Expert Panel members interested in Precision Medicine? How does this pertain to the IOM Roundtable work?

Nurses have been interested in genomic advances for quite some time. However, with the announcement of the “Precision Medicine Initiative,” the Expert Panel realized that there may be new opportunities for nurses to be engaged in ways to make genomic discoveries meaningful to individual patients.  And so, the expert panel came together to put forth some priorities that they felt would be important as nurses prepare for the future implementation of “precision medicine.”   The roundtable has been investigating some issues that will be important as discoveries make their way into clinical practice.  It has looked at the importance of evidence; the importance of educational preparation for healthcare providers including nurses (and most specifically advanced practice nurses); and the importance of implementation science as we look at how discoveries make their way into clinical practice. The paper that we put together brings forth some of the issues around these three themes:  evidence, an educated workforce, and systems that have the capacity to obtain and maintain and share data from individual patient records that can be useful as further discovery goes forth.

Question 2. What issues pertain to nurses? How does it relate to patient understanding of the purpose and use of genetic tests?

Nurses encounter patients and their genetic healthcare information in a lot of ways. We particularly are concerned about the advanced practice nurse who is often the frontline provider for many people in our society, as well as those who are in medical specialty units, for example in oncology or cardiology programs.  Nurses, regardless of whether they are advance practice nurses or nurses in general practice, will probably in the future have an opportunity to be informed about genomic advances that have to do with drug development: the matching of the right drug for the right dose for the right patient.  This is one of the, in general, one of the goals that is in the “Precision Medicine Initiative,” and nurses will need to understand why a particular genomic test might be appropriate for an individual and why a certain drug or dose may be different for that individual than for someone else with the same clinical diagnosis.  And I think, most importantly, nurses are often the individuals who assess whether or not the patient understands all of this and if this information is comfortable for the patient, so that they are in agreement with their treatment plan and the particular medicine regime that they are on.

Question 3. What should nurses do now in relation to genomic education?

There are so many opportunities for nurses to use genomic information. I’ve already described one of them for advance practice nurses.  In many states they have prescription privileges and they will be involved in making these medication decisions.  The advance practice nurses also may be the frontline provider.  For example, a nurse in a cardiology program or even a nurse who is in a community-based practice, will recognize when a person has a condition that may require further genomic evaluation, both for the prescription of the medications or perhaps to further clarify their risk for a clinical problem.  The education is important and many of us didn’t receive that education in our basic nurse practitioner programs.  That’s why the Roundtable wanted to be sure to highlight the importance of opportunities for advanced practice nurses to maintain or acquire new education regarding genomic advances so that they are prepared to use them as these advances come into their clinical practice.

Follow-up. And what about nursing research and systems change?

Nurse researchers are involved in understanding the biologic aspects of symptoms that people experience, as well as how people manage their symptoms. As more and more genomic discoveries become available to us, these nurse researchers are going to need to be well-versed in a wider range of methods, both at the bench and in the application of this knowledge in clinical practice.  I think it is important for nurse researchers to understand the various kinds of “omics” methods that will become available to researchers, as well as to anticipate what some of the behavioral questions are going to be.

Furthermore, there’s another aspect of research that has received probably less attention and that is the field of implementation science. And this is a type of research that helps us understand when a clinical innovation is introduced into practice, what are the factors that contribute to it being a success or perhaps make the success more limited? These questions revolve around the practice and process of implementation and looking at outcomes not only from the patient point of view but perhaps from the healthcare provider or the systems point of view. The more we can learn about that aspect, I think, the better we will be able to predict what are some ways we can move that innovation into practice timeline to accelerate it so that it doesn’t take so long for innovations to make it into clinical practice.

Final Follow-up. And how important is advocacy in this area?

These innovations and these discoveries, and the potential for them is very exciting. However, people from underserved populations have not always had the opportunity to participate. We know that some of our databases from discoveries do not represent our society as far as the ethnic representation, or people who don’t have access to major medical centers, or don’t have access to understanding of this fairly complicated field of genomic healthcare. Nurses are excellent advocates.  Often they understand and identify when people don’t understand what they are being told, or what they are being asked to consider. So this is an important role that the Expert Panel identified for nurses across all settings: to be alert to the need for people from all backgrounds to have the opportunity to participate in genomic research, in data sharing. But also to have the opportunity to have this information explained to them in a way that is most meaningful to them.  We often say nurses are the first in and the last out of a room.  This is often where nurses identify where advocacy skills need to be applied.


Leadership Interviews – “3 Questions” – The New Nursing Section of the New York Academy of Medicine

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

The New Nursing Section of the New York Academy of Medicine (NYAM): A Rich Opportunity for Interprofessional Collaboration

Today’s healthcare teams are no longer made up of members from single disciplines because, as we know, patients’ needs are complex and interconnected. Hospitals and community based care demands that the knowledge required to deliver quality healthcare comes from various specialists, well beyond physician centric approaches. Professionals who are able to work and thrive in these environments need education that incorporates how team-based collaboration should occur. The call for interprofessional education (IPE) to promote interprofessional collaboration from the Institute of Medicine is not new. Their report in 1972 “Educating for the Health Team” (IOM, 1972) promoted more team-based education for U.S. health professions. Over the past 40 plus years, numerous meetings and reports followed.

The conversation continues with efforts from the Interprofessional Education Collaborative (IPEC) and organizations including the American Association of Colleges of Nursing (AACN) who are calling for the opportunities to prepare the contemporary healthcare workforce with interprofessional education strategies (see IPEC Report). The IOM recently released another report (2015), “Measuring the Impact of Interprofessional Education (IPE) on Collaborative Practice and Patient Outcomes” that recommends measures and expected outcomes “downstream” at the patient care delivery end. This report, along with others, offers recipes and exemplars for building collaboratives with members from multiple health professionals.

But teams and collaboratives only emerge when professionals share in a collective set of objectives. And the need for interprofessional organizations where members work in tandem toward achieving health goals for the public grows. One such organization, the New York Academy of Medicine (NYAM), has been directing a choir of 16 groups of professionals, from medicine to social work, who share in the song of improving urban health. This year, NYAM Board of Trustees approved the new Nursing Section, one of now 17 formalized groups of professionals The Nursing Section has already begun to make its mark in this interprofessional organization.

Connie Vance, EdD, RN, FAAN a distinguished member of the American Academy of Nursing and Professor Emerita at the College of New Rochelle, has assumed the leadership role as Chairperson for the Nursing Section of NYAM. She answered our “3 questions” about the structure and potential of nursing’s impact on promoting urban health as a recognized section within this prestigious organization. We welcome your comments or questions.

Veronica D. Feeg, PhD, RN, FAAN

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Connie Vance


Connie Vance, EdD, RN, FAAN

Professor Emerita at the College of New Rochelle, NY

Chairperson for the Nursing Section of NYAM



Question 1. Can you tell us about the New York Academy of Medicine (NYAM) as an organization and the priorities of the Academy? What makes NYAM a good organization for nursing?
To listen, click here.

The New York Academy of Medicine is a very interesting historical organization. It was founded over 168 years ago in 1847 by a group of physicians who felt that some of the public health issues of urban life should be addressed in a broader format. So, with all that long history, the current membership of NYAM consists of Fellows, members and graduate students. Currently there are over 2,000 Fellows. These are from Medicine, Nursing, Public Health, Social Work, Pharmacy, Dentistry, Academia and Research.

What makes it, I think, very unique is its true interprofessional organization that engages in interdisciplinary approaches to really address serious problems and issues in urban health. And for nursing it is an ideal organization for us to work with these other distinguished professionals, and to bring our particular voice, perspective, [and] values to this work. Actually the priorities of NYAM are very much in tune with nursing’s values. Certainly:

(1) To promote health and prevent disease;

(2) To create environments that promote health, particularly health aging;

(3) To eliminate health disparities and really promote health of vulnerable populations.

All of these three are certainly in tune with nursing’s values and mission.

A fourth one is using the wonderful Academy library which is a very distinguished resource for health professionals. It promotes the heritage of public health and medicine and other health professionals.


Question 2. Can you describe the new Nursing Section of NYAM and how it fits into the work of the Academy?

To listen, click here.

Currently, Nursing (in May) was approved by the Board of Trustees to become the 17th Section. The work of the Academy is done in sections where there’s focused activity on certain key areas of interest. There [are] also [several] special interest groups, [including]: long-term care, primary care, population health, and then there’s an ethics network. There [are] other sections like: evidence based health care; health care delivery; social work has a section; emergency medicine; and so forth.

So, we feel very fortunate to have become a formalized section. Nursing has been a presence for many years in the Academy. There were nurses serving on the Board of Trustees in various sections. But the fact that now this has been formalized is very, very special. And the President, Dr. Jo Ivey Boufford and Executive Vice President, Tony Shih have been enormously supportive and engaging in make sure that we get the appropriate staff support. That is going very well.


Question 3. What is the structure of the Nursing Section and what new exciting developments can we expect to happen in the upcoming months?

To listen, click here.

There are four officers; there’s [eight advisers who are renowned nursing leaders], and then we have agreed to work in five task forces. Our first very exciting initiative is an educational launch of three public lectures beginning in Fall of 2015 with a grant of 25 thousand dollars from the Jonas Center for Nursing. Dr. Darlene Curley, a nurse who is the Executive Director of the Jonas Foundation has been enormously supportive and strong advocate of this new section. So on October 6th the first public and professional workshop is on technology in the classroom. The second one will be held in Spring on end of life and palliative care. And the third one in the Fall will be vision and blindness in aging.


Additional Follow-up: Can you discuss the future possibilities for the Nursing Section in NYAM?

To listen, click here.

ABSOLUTELY! First of all, we want to continue to be formally integrated. [There is a] a nurse on the Board of Trustees and on the [NYAM] Awards committee, and [nursing co-chairs serve on other sections]. We are nominating and having accepted more and more Fellows, members and students into the Academy from the nursing profession, we now have over a hundred Fellows. One initiative is to increase our numbers and presence.

This is a great forum for interprofessional collaboration, networking, mentoring for peer learning and support. So, through these public and professional lectures, we can do that. I see us attempting to draw in many more nursing graduate students to have them engage with us in educational projects, in research studies so that there can be mutual mentoring. We want to spread our voice and perspective through all of the other 16 sections. There are nurses currently serving as co-chairs. But we have been also approached by various sections seeking our membership – all of those things are important.

I think that also we want to engage and join in some of the scholarships and grant work, some of the new initiatives in data collection. The Academy is launching a new data collection-access, to access databases with the New York Department of Health and Mental Hygiene – so nurses can jump into that.

In conclusion, I do believe that this is a moment of great opportunity for nurses and the nursing profession that we can exert our leadership. [We have enormous talent and leadership in nursing]. Now is the time to use that leadership within this truly active interdisciplinary interprofessional organization so that we can make a difference in urban health, education, policy and research.

Leadership Interviews – “3 Questions” – Redesigned Health Care

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

The Newly Transformed Health Care System: How Nursing Can Prepare for Change

While we know that healthcare today is fragmented and inefficient, we also know that efforts are underway to shake up old systems and embrace innovation with promise. The elderly population continues to expand and so too does the demand for long-term care services, particularly for functionally impaired and chronically ill older adults. Services that support older adults require payment systems that change the status quo in a way that improves quality but does not break the bank. Health care payers are moving more toward a system of payment that relies on new philosophies of paying for value rather than rewarding volume in the old fee-for-service models. With the emergence of Patient-Centered Medical Homes (PCMHs) and Accountable Care Organizations (ACOs), Medicare payments will shift and health care providers such as hospitals, clinics, physician practices, will need to redesign care delivery and redeploy the workforce in new roles and settings.

In these redesigned new markets, we will see new job titles and roles that will emerge. Care coordination and interprofessional collaboration will be key. In a recent research brief, Dr. Mary Naylor and colleagues dicuss how the nature of nurses’ jobs are set to change in this new redesigned system of care.

Nursing in a Transformed Health Care System: New Roles, New Rules (E. Fraher, J. Spetz & M. Naylor) Penn LDI Interdisciplinary Nursing Quality Research Initiative (INQRI) Report: Research Brief, June 015.

Mary Naylor is the Marian S. Ware Professor in Gerontology and Director of the New Courtland Center for Transitions and Health at the University of Pennsylvania School of Nursing. Her extensive work bringing Transitional Care models to the attention of health systems and payers focuses on older adults with complex care needs, emphasizing care coordination, and changing how we look at Long Term Services and Supports (LTSS). We asked her to elaborate on her recent article by answering 3 Questions!

Veronica D. Feeg, PhD, RN, FAAN

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Mary Naylor Photo


Mary Naylor, PhD, FAAN, RN, Marian S. Ware Professor in Gerontology and Director of the New Courtland Center for Transitions and Health, University of Pennsylvania School of Nursing, INQRI Program Director

Question 1. In a recent brief, you and your colleagues described new roles for nurses in a redesigned health care system.  Can you describe these roles and their importance to advancing the health of our society.


To listen, click here.

This is an extraordinary time for nursing and for health care and I was delighted to have the opportunity to work with my colleagues Erin Fraher and Joanne Spetz working as part of the Robert Wood Johnson Foundation INQRI (Interdisciplinary Nursing Quality Research Initiative) along with the Leonard Davis Institute on a brief that attempts to bring to the fore some of the – on the one hand tremendous opportunities we have and some of the challenges that we have currently and responding to them.

So nursing, I think has an enormous chance right now to capitalize on changing needs – vastly changing needs of  populations. We focused in the brief on just one example, older adults who are waking up every day with multiple chronic conditions: some of whom are going to be in that state and experiencing the challenges of these health changes for a long time; some of whom are near end of life and need to have a different set of services to meet their needs. So one of the big factors contributing to changes in expanded roles for nursing are the vastly changing needs of our populations.

We are seeing also this enormous change in  delivery system models and much of this is driven by how important it is for our society to recognize that we have to adapt; we have to deliver a different set of health services; we have to engage a different set of health partners. So newer delivery models, I don’t know if they are new today, but patient centered medical homes, accountable care organizations and cross cutting these models are strategies or approaches to care delivery, such as population health insuring and improving care coordination. So these are different I mean, this is not the same old delivery system that we’ve been working in for years, but rather a vastly changing delivery system which has not yet reached where necessarily its going; but the path taking the changing needs of the population and the expansion of competencies of nurses who are exquisitely prepared to address these needs and could get even more prepared in the future to be able to take advantage of and lead a change – I think all of these seemed to align during this period time. So we wanted to highlight that in this brief.

Question 2. How has your team’s work on the Transitional Care Model influenced your thinking about future nursing roles?

To listen, click here.

Well I think the transitional care model is a terrific exemplar that is evidenced based. It’s proven about the contribution that nurses can make in this evolving health care system. So we’ve had the great fortune for many years to both better understand what it’s like to be a consumer of health services; what it’s like to be someone coping with/confronting major challenges in health largely chronic illness; what it’s like to have to try to navigate our health care system as patients and families are increasingly being asked to take on roles and responsibilities related both to their health and coordinating their care; and how it is that nurse led solutions such as the transitional care model can make that better – can both help people more immediately address their needs and at the same time can really help them as they try to interact with multiple clinicians in multiple settings.

So it is essentially saying to patients and families caregivers “you’re not out there alone! That part of what we do in our health care system is not only help you meet your needs, but also to make that journey as easy as possible” – especially given the stress that these patients and families are under.

So the Transitional Care model helped us to understand much more intimately the needs of a population whose health is changing all of the time and also helped us to understand how nurse led solutions, which are team based, which capitalize on the gift of physicians and social workers and every other member of the care team, but how all of that which has a nurse as a quarterback better positions the people that are counting on us to have their needs meet in a much more timely manner. And to do that in a way that makes much efficient use of resources.

Question 3. From your perspective, what needs to happen to ensure widespread use of nurses in these new roles.

To listen, click here.

Well I think nurses really, really need to understand that right now we’re going through major system redesign. It has enormous implications for the discipline and for specific roles that nursing will play. And so we need to be major partners in that system redesign because the workforce implications are emerging simultaneously. I think it is essential that we: commit ourselves as a profession and to develop some of the expanded competencies that are really at the forefront of system redesign – so this work around patient engagement and family care giver engagement the competencies needed to manage complexity help people manage both the health and social risks that they are experiencing in their communities; understand what it means to be able to take on this construct of population health which is  to say we know how to not just care well for individuals or groups of individuals but we know how to care for the population of individuals  in communities; understanding how to use and bring to the fore skills in managing  the care of populations over time.

I also think  it is essential  that competencies around teams which are (you know we hear about everyday how important teams are) but when we actually have a grounding a socialization a history of working in partnership with other health clinicians in partnerships with community based organizations whom I think are emerging as core members of future teams – those that are based in service organizations helping people to get their meals and their transportation, helping them get their copays for their medications. And finally I think competencies around performance improvement. There is nothing that is going to be static about our health care system and nurses really need to understand  how to risk stratify populations so they can best match needs with services available. They need to: understand processes that continually enable them to get better; how to use data big and small to improve the quality of what they do; and how to be great stewards of resources.

So I would say that the needs right now are for every part of our system – our leadership our educational systems and our practice environments to be aligned in working to make sure that nurses emerge, not just with a central role because that’s what we are hoping for our profession, but  emerge as the providers  – key  providers – of services because they are the best positioned to be able to accelerate improvements, redesign, and better care and outcomes for our society.

Additional Follow-up. Do you have anything else you might to add to advice for nurses?

This is a really good time not just to be at the table. It’s essential time, obviously, to be at the table, but to be able to represent all of the possibilities that are grounded in evidence about ways in which nurses contribute as members of teams as team leaders as coordinators. So when you have that chance to be at the table, make sure that you’re there as the most exquisitely informed and articulate spokesperson for the range of possibilities that will enable nursing’s voice to be heard, nursing’s contribution to part of future health system redesign.


Leadership Interviews – “3 Questions” – Future of Nursing: Campaign for Action

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

The Campaign for Action: Transforming the Nursing Profession

The Affordable Care Act and the changing landscape in health care are among the hot topics of the day. The pace of change requires nursing to be vigilant for the profession and engaged with policy makers, providers and boards who are instrumental in decision making that impacts health care. Education, workforce, and scope of practice are all part of the national conversation. These critical issues that are important to nursing warrant rapid dialogue among informed readers, and traditional modes of publishing cannot keep up with the pace of information available. “Agility” is needed to deliver contemporary arguments electronically for persuasive commentary for building consensus that is timely, substantive and prepared for discourse. Blogging and blogs are increasingly providing a paperless platform for professionals to present and debate ideas in the socially connected evolving web. Nursing Outlook now offers an online environment – “3 Questions” – to engage nurses with nursing leaders in discussions around focused topics that are important for the profession.

The Institute of Medicine (IOM) Report published in 2010 – THE FUTURE OF NURSING: LEADING CHANGE, ADVANCING HEALTH – set the stage for changing health care forever. This report kick-started national activities and awoke the nursing profession to organize toward maximizing the reach and opportunity for nurses in order to improve health of all citizens. Many of the recommendations launched organizations to begin to take action toward achieving goals by the year 2020. The Robert Wood Johnson Foundation (RWJF), mobilized by the Report with its key partner, the Center to Champion Nursing in America at AARP, were instrumental in creating the Campaign for Action.

Susan B. Hassmiller, Senior Adviser for Nursing with the Robert Wood Johnson Foundation, has been leading the charge from the IOM Report and speaks to the numerous activities underway with national organization partners and all 50 states and the District of Columbia in the “Campaign for Action.” According to the RWJF website, Dr. Hassmiller is shaping and leading the Foundation’s nursing strategies in an effort to create a higher quality of care in the United States for people, families and communities. Drawn to the Foundation’s “organizational advocacy for the less fortunate and underserved,” Dr. Hassmiller is helping to assure that RWJF’s commitments in nursing have a broad and lasting national impact. We asked her to elaborate on her recent article in NURSING OUTLOOK by answering 3 Questions! We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN Editor/Moderator

SueHassmillerSusan B. Hassmiller

Director, Future of Nursing: Campaign for Action

Senior Adviser for Nursing

Robert Wood Johnson Foundation




Question 1: The Robert Wood Johnson Foundation has generated nearly $18 million to date and others have supplemented activities of the Campaign for Action following the Future of Nursing release to move the recommendations and sustain the momentum of this historic IOM report. Can you describe the value of investment supporting a national agenda like this to catalyze change in health policy?

The Robert Wood Johnson Foundation has invested in nursing, really since the beginning of the foundation over 40 years ago. And even before that General Robert Wood Johnson was known for reaching into his very deep pockets. He of course was one of the founders of Johnson and Johnson so he used to reach into his very deep pockets to help both nurses and physicians with scholarships. That’s really where it started.

So why does the Robert Wood Johnson Foundation invest in nursing? Not really just for the sake of investing in nursing but because of nursing’s very close link to how we as nurses impact the overall health and healthcare for all Americans – and that’s really the Robert Wood Johnson Foundation mission, which is to improve the health and health care of all Americans. So investing in nursing is very important – it’s a very important means to an end for us. And ensuring that nurses are the most effective and efficient they can be helps with our own mission, and it helps with the triple aim which is what we are very concerned about too: cost, quality and access.

Our return on investment for everything we are putting into our nursing work … and remember it is not just the support for this IOM report and the campaign as I alluded to … we have been doing this for decades! We still have many investments going on: the Executive Nurse Fellows Program, Nurse Faculty Scholars and our investment in programs like QSEN (Quality and Safety Education in Nursing) and TCAB (Transforming Care at the Bedside). So our return on investment will come in the form of patients or consumers and their families having the most highly skilled and educated nurses available. Having nurses whenever they need them whether in schools or in primary care clinics or in places where they work. And that nurses will help in the equation of keeping our healthcare costs more reasonable! And because of this we will all be healthier and have better healthcare because of our nursing workforce.

Question 2: The Campaign for Action was intended to transform and diversify the nursing profession. With its powerful partners over the past 4 years, what do you consider the most profound changes that have been exemplars of an improved health care system?

Well, when you talk about partners, I think we are all on this journey together. There are so many health care partners, both individuals and organizations – partners with how we are helping to improve our health care system. Nursing can certainly help with that, and Robert Wood Johnson Foundation is betting on this equation. A few examples might include our work around insuring that all nurses practice to the top of their education and training. We care about this for all nurses. Yes. There are a lot of investments being made in ensuring that laws are modernized so that nurse practitioners can practice to the top of their education and training. You know, a recent piece that Nursing Outlook published and RWJF helped to fund called “Practice Characteristics of Primary Care Nurse Practitioners and Physicians” – it was a piece that Peter Buerhaus was involved in – and this research, published in Nursing Outlook found that more nurse practitioners as compared to physicians practice in rural, inner city, and more community health settings, and are much more willing to accept Medicaid patients. This is great news! This is really good news!

So working on advocacy efforts to modernize laws to assure that nurses practice to the top of their education and training, and then to have evidence that shows that nurse practitioners are making a difference for very important populations will really help to push this envelope further. And we really need a breakthrough in this area, don’t we?

And I would be remiss if I did not say, speaking of partners, what a key role AARP is playing in this scenario. They can, without RWJF funding, because we are not allowed to actually be on the ground promoting specific legislation. So AARP can be there supporting all of our 51 Action Coalitions – and we have Action Coalitions in 50 states and the District of Columbia. So they’re supporting our Action Coalitions and our Action Coalitions are crafting their own legislative language for these modernization efforts, and offer technical assistance with the legislative process.

In a last example I would use in talking about partners and how it takes everybody to do this is really our current effort around 10 KN – 10 KN – otherwise known as getting 10 thousand nurses on boards by 2020. So even with 51 Action Coalitions and our campaign headquarters which happens to be at AARP working on this, we can’t do this alone. So we formed a coalition starting with 19 other national nursing association to work on efforts to get 10,000 nurses on boards. And they’re doing this and they’re leveraging each other’s work – leadership training work, websites and the like.

So a final note, we can’t do any of what we’re doing alone. This is a campaign, this is a coalition. By its very definition, we use hundreds of partners. We have policy maker involvement, business involvement, national association involvement, consumer groups … it will take many to see this through.

Question 3: From your perspective, what needs to happen for the collective activities of the Campaign for action to reach a summit of widespread success?

One of the most important recommendations that many are working on (we’re working on at national headquarters at AARP, Robert Wood Johnson Foundation has a separate national program office working on this as well, spearheaded by our own tri-council) is really  the 80/20 recommendation. That means of course getting 80% of all nurses in the country to a BSN or higher. You know many people ask me if I think we will attain that goal but 2020 and I say “you know definitely in pockets we will get there!” But this is really, really hard because  as many new baccalaureate graduates as we have, community colleges are pumping  out just as many graduates on their own. So it’s almost like the dog chasing its tail. We’re getting … there we’re doing it! It’s unbelievable, but there’s just so much work. So by the 2020, we’ll certainly get there in pockets. But what we’re really doing in this campaign with this recommendation and other things is building the infrastructure. We are on a path to build an infrastructure. Community colleges – what do I mean by that? Community colleges are working with universities; memoranda of understandings are being formulated; acceptable transfer credits both in numbers and types are being agreed to; faculty at all sides are working with each other; employers are developing policies about hiring preferences; and continuing education (and who gets recognized and who can go on).

So this is all about building the infrastructure and this takes time. It’s just not simply a matter of counting numbers. The infrastructure must be built. This is about changing cultural and social norms. So in 2020, my goal would be that every nursing student coming out of a community college program, like I did, would fully know, understand, and have the wherewithal to continue his or her education. They would come out and they would say “OK … so this was my first step. This is where I’m gonna’ go now” …  Nursing students don’t have to think about whether they should go on – they just know they will, because the infrastructure is there. They would know that community colleges are only a first stop. That to be a nurse in the United States will take moving on to a BSN. And it’s the same with our 10 KN coalition (ten thousand nurses on boards).

It’s about changing social and cultural norms so that no decision makers, CEO, or persons asking for testimony on Capitol Hill will ever have to think about or wonder whether they should have a nurse on their board or providing testimony. They will just automatically have it because they know that nurses are on the front lines. They are the reality check to any decision that is being  made in this country.  We think it is wonderful that lawyers and doctors and other policy makers are there making decisions, but if we are not there, then those people are making decisions for us and for those we care for … and that’s unacceptable!

Follow-up Question: In closing, do you have anything else to add?

I’m really excited that Robert Wood Johnson Foundation has given me the opportunity and has given our country the opportunity to build this capacity in our nursing workforce. It’s so very important – but what that means is we all have to be involved. I talked about needing partners and that means everyone listening to this today – what does it mean to be involved? Go to the website and look up your state. There’s a place where you can click on your state – Alabama, Alaska, Minnesota – see what’s going on there. You can see who your leaders are and you can see how you can personally help make this nursing profession the best ever! This is history in the making and we need everyone.

Leadership Interviews – “3 Questions” – Virginia Saba Wins Award at the 2014 FNLM – NI Awards Ceremony

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

Electronic Health Records…Meaningful Use…Required Patient Care Documentation…Nursing Terminology!


These are among the hot topics of the day in hospitals facing astronomical changes in the technology growth that has affected all aspects of budget, planning, regulation and patient care! These critical issues that are important to nursing warrant rapid dialogue among informed readers, and traditional modes of publishing, like software procurement and implementation, cannot keep up with the pace of information available. “Agility” is needed to deliver contemporary arguments electronically for persuasive commentary for building consensus that is timely, substantive and prepared for discourse. Blogging and blogs are increasingly providing a paperless platform for professionals to present and debate ideas in the socially connected evolving web. Nursing Outlook now offers an online environment – “3 Questions” – to engage nurses with nursing leaders in discussions around focused topics that are important for the profession.

In the field of Nursing Informatics, there is no one more well known than Dr. Virginia K. Saba, EdD, RN, FAAN, FACMI, President and CEO SabaCare, who received the FIRST Friends of the National Library of Medicine (FNLM) Nursing Informatics Award for her pioneering work that has rocketed the field of Nursing Informatics nationally and internationally. She gave her remarks at the event on September 14, 2014, in Washington DC. Her publications and manuals are used by many vendors and nurse informaticians to code nursing care. Her comments and opinions are always provocative and she has been instrumental to move the dialogue forward for a nursing terminology that captures the “essence” of nursing electronically, lest our professional actions continue to remain invisible in the electronic health record. Click here to read her comments: Saba FNLM-NI Award Speech Sep 14.

For links to the SABACARE website, click here: SABACARE.

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN



Virginia K. Saba, EdD, RN, FAAN FACMI

President and CEO, Sabacare



Click on the bars below to listen to each question in the interview.


Question 1. Why is nursing care not visible in the Electronic Health Record (EHR) or Healthcare Information Technology (HIT) systems which are required for the implementation of the HITECH Act of 2009 and primarily for its ‘meaningful use’ legislative requirements?

Today, professional nursing practice is not visible in the electronic health record (EHR) systems primarily because nursing services are not required to be reimbursable.  The HITECH act of 2009, which implemented “meaningful use,” has not included nursing practice in most of its legislative requirements for Stage 1, which was implemented in 2011/2012 and Stage 2, which started in 2013 and is still going on in 2014. They do not specify nursing involvement related to CPOE (which stands for Computerized Provider Order Entry), Quality Indicators, Outcome Measures, or Discharge Summaries.

At this time, the federal agencies responsible for implementing the “meaningful use initiatives” – namely the Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator of Health Information Technology (ONC) – do not seem to recognize professional nursing as an essential, independent discipline.  They only seem to recognize those healthcare specialties that are revenue generating because they have established cost values for their coded terminologies that are reimbursable such as the services provided by the laboratory, radiology, pharmacy etc.   However, our professional nursing organizations do not seem to be recommending that nursing departments in hospitals and other healthcare facilities become revenue generating in order to establish costing values for coded nursing services based on a standardized nursing terminology.

The introduction of computers in the patient care setting during the 1970s provided an unprecedented ability both to capture and automatically aggregate nursing care data. Since then, nursing informatics (NI) programs have expanded in our colleges and universities, and the cadre of nursing informatics (NI) certified Experts have emerged.  In 1992, the American Nurses Association (ANA) officially recognized Nursing Informatics as a new nursing specialty. Despite this evidence of successful assimilation of computers by our nursing profession, nursing currently is still invisibile as a member of the healthcare team in the electronic health record (EHR).

The physician-centric focus of the federal requirements for “meaningful use” keeps nursing invisible and puts the needs of nursing in a secondary position.  Currently, nursing departments, as I said, are not revenue generating and do not require [charge] for individual nursing services but remain in the hospital room rate.  Hospitals receive their funding for their nursing staff based on a formula (pre-determined by CMS) that calculates the percentage of the rate per patient for nursing services regardless of the intensity of nursing care required.

Thus the federal government’s incentive program for “meaningful use” provides financial incentives for only physicians and hospitals to implement and utilize electronic health records systems; however, it is virtually ignoring Nursing – and our profession bears much of the responsibility.

Question 2: What is the status of nursing languages in today?  And, are they being used for documenting professional nursing practice?

The American Nurses Association (ANA) has traditionally supported the documentation of nursing practice.  As early as 1970, the ANA recommended that professional nursing documentation should follow the 6 steps of the nursing process.  Since then, the ANA has supported many initiatives and endorsed the integration of computer technology for documenting nursing practice including the development of the criteria for a nursing classification and/or terminology.  In 1992, the ANA recognized the first four of the 12 recognized nursing classifications or terminologies “recognized” today. The twelve languages consist of two data sets, two nomenclatures, and eight classification systems, all of which were developed at different times, by different groups at universities or at private organizations, were structured and classified differently, and are marketed differently.  Also because of the copyright restrictions and how they are structured, the remaining eight classifications cannot be harmonized and even have difficulty being computerized.

Regardless, the ANA does not want to endorse one single free standardized nursing language for the documentation of nursing practice.  As a result, the federal government and the electronic health record system developers or vendors have been presented with the dilemma as to which nursing terminology to endorse, select, and/or recommend.   Because of the different terminology standards review processes the ANA was not able to harmonize or recommend one terminology for the EHR systems.

Furthermore, since several of the nursing terminologies were integrated into the SNOMED-CT, (which stands for Systematized Nomenclature of Medicine -Clinical Terms), the federal government indicated that the nursing terms and concepts in SNOMED CT would be acceptable as a nursing language.  The federal government therefore has designated SNOMED-CT as the ‘interoperable’ standard for electronic healthcare information exchange including nursing which has to map to it to meet federal regulations.

SNOMED- CT was originally developed by the College of American Pathologists (CAP) and distributed in the United States by the National Library of Medicine (NLM) Unified Medical Language System (UMLS) called Metathesaurus.  SNOMED CT is considered to be a reference terminology in that it is similar to a dictionary of thousands of healthcare terms not categorized by specialty but by domains or characteristics. As a result, the nursing terms in SNOMED CT overlap, are not defined, and not easily retrieved for the documenting nursing practice or developing nursing plans of care, making it difficult for nursing to implement in any electronic health record.

Even though nurses represent the largest group of healthcare professionals in hospitals and other healthcare facilities, the nursing profession has not implemented or utilized computers for the documentation of their practice in most hospitals and other healthcare facilities. Furthermore, even though the ANA has outlined professional nursing practice as the documentation of the 6 steps of the nursing process they do not use it to document in actual practice either manually or in any electronic health record (EHR) system. As a result, we have a problem in today’s electronic health record with a mixture of electronic nursing notes that still remain.

Question 3:  Is there a standardized nursing language that can be used for documenting nursing practices? If so what should its characteristics be and why should it be used?

Nursing does have a single nursing language that is free, coded, and has a standardized framework with nursing diagnoses, nursing interventions and nursing outcomes for describing the “essence of nursing care.” It is a unified nursing language with a framework that addresses the 6 steps of the nursing process – namely the Clinical Care Classification (CCC) System.

The CCC System as it is called was empirically developed from research using live patient care data from over 8,000 patients’ documentation for an entire episode of illness.  It consists of two interrelated nursing terminologies: 176 CCCs of Nursing Diagnoses and 528 Outcomes; and 804 CCCs of Nursing Interventions and Actions, both of which are classified by 21 Care Components to for one unified system.  The CCC System is a standardized coded nursing language that has been ‘recognized’ not only by the ANA but also accepted and recognized by the federal government in 2007/8 as a free nursing language that codes “Nursing Care” and has the capability to be exchanged since it is interoperable across settings and systems.                 

The CCC System was specifically designed and developed for the electronic health record (EHR) and requires no licensing fee. It meets all the criteria not only for the ANA but also those recommended by the national standards organizations such as:  the concepts are atomic-level, with a unique identifier that is a code number, explicit definition, has concept permanence (that means they are only used once), and compositionality of the concepts which can combine to form unique concepts etc.  It used a five digit code similar to the coding structure of ICD-10.

The CCC system is used to document nursing practice based on the Nursing Process: assessment, diagnoses, expected outcomes, planned interventions, implementation of the interventions, and evaluation of the patient’s response to the nursing care provided; and also provides unique codes designed to capture all nursing care documentation or nursing plans of care data elements.

Because a single codified nursing language is not being used, our profession has not been able to collect comparable data on nursing practice to demonstrate our value; and, as a result, nursing is being overlooked in the current federal EHR meaningful use initiatives. Instead, vendors are primarily focusing on developing capabilities for physician-centric electronic health record systems that ignore the needs of nurses and that may prevent professional [bedside] nurses from practicing as the independent professionals we’ve struggled so long to become.

If the CCC System was recommended as the primary standardized, coded nursing terminology for documenting nursing practice in the electronic health record, nursing would become “visible.”  The CCC nursing data will be used to measure quality, patient outcomes, workload, as well as the costing out of nursing care.  Such data can also be aggregated to generate evidence from across the continuum of care, showing the positive impact nurses have on patient care. Once a single nursing language is implemented in all EHRs, nursing will be able to communicate effectively and efficiently within and across settings, collect comparable data on nursing practice, become visible, and ultimately provide the federal agencies and healthcare reimbursement entities the patient care data that they need to measure nursing’s unique contribution to patient outcomes.

Nurses must realize the importance of the patient care data they document in providing evidence of the impact nursing care activities have on patient outcomes.

Nursing to embrace the electronic documentation of patient care data is needed in order to prove that what nurses do makes a difference in patient outcomes and to become an independent, visible profession for the practicing nurses.

FOLLOW-UP QUESTION: What is your solution?

My solution is the following: For over 30 years, I have promoted the integration of computer into nursing practice for the benefit of our patients and our profession. Today, we are at the crossroad and can no longer wait for a miracle to happen.  My call to action is for the professional nurses and the professional nursing organizations to demand that the electronic health record systems support coded nursing care data using one unified language that  can be used to document nursing practice based on the ANA’s Nursing Process – namely the CCC System.

That is why I recommend that the CCC system become the nursing profession basic standardized coded language of choice using its framework for collecting the critical data needed to make nursing a visible member of the electronic health care team in the electronic health care systems. This is a critical time for nurses to act! We must become visible to remain viable as a profession.

Leadership Interviews – “3 Questions” – Advancing Symptom Science

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

With the complexity of our health care system in the United States growing, it has become even more important for nursing to parse out the domains most important to patients and families and contribute to the knowledge related to illness and comorbidity through nursing research. Symptom domains such as insomnia, pain, anger, anxiety, depression, nausea and fatigue are among the numerous troublesome problems that patients experience with illness. A symptom or cluster of symptoms may be the result of disease or other etiology, and we need to draw our research attention beyond the disease to formulate evidence based interventions that work.

The nursing science upon which to build our understanding of symptom management is aided by the development of the National Institutes of Health (NIH) development of the Patient-Reported Outcomes Measurement Information System (PROMIS), with the National Institute of Nursing Research (NINR) playing a lead role. This national attention to realize a goal of standardizing research approaches to measurement offers us new ways to advance the state of symptom science. Empirical findings related to symptom assessment and management are essential to inform health policy in efforts to restructure health care systems that meet patients’ needs.

The September October 2014 issue of Nursing Outlook focuses on symptom science with articles that highlight current developments and contributions of the NINR to advance the state of the science in symptom measurement. Dr. Elizabeth Corwin and colleagues discuss a vision for the future with the PROMIS system as a key accelerator, particularly with the potential of “big data” and “common data elements” (CDEs).

Elizabeth J. Corwin, Associate Dean for Research and Professor at the Nell Hodgson Woodruff School of Nursing, Emory University in Atlanta Georgia. She is also PI and Co-PI on NIH grants related to clinical symptoms, and author of the textbook Handbook to Pathophysiology.

For links to the PROMIS website, click here: PROMIS.

We invite commentary that is thoughtful and provocative! Join the online dialogue!


We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN

Elizabeth J. Corwin, PhD, RN, FAAN
Nell Hodgson Woodruff School of Nursing
Emory University, Atlanta, GA

Question 1. What is different about nursing symptom science now compared to previous years that led your group to call for new ways to envision the future?

To listen, click here.

The culture has really changed in terms of what is expected and what are the possibilities for nursing symptom science. For example, in the past it has often been individual researchers working alone or with just one or two others to ask questions that involve small groups of patients or families. And now we have the capability to think about the big picture including complex interactions between symptoms and across populations. We can share data. We can utilize big data. It’s really an opportunity to jump forward with our research. And the emphasis to start thinking about the bigger picture, and pulling together diverse groups and patients and families has come from the National Institutes of Health itself, which has encouraged data sharing for the common good to really improve outcomes for families and patients.

So, it really is coming from that emphasis: to share data, use resources widely and for the best good for all. Also, with the National Institute for Nursing Research, the emphasis on centers and across all NIH institutes, the emphasis on interdisciplinary work and teams has allowed for new perspectives on diseases, interventions and self-management to really come into light in a way that hadn’t been before.

Another thing I think that has changed that is really driving the future of nursing symptom science is that so many nurses have moved into very very important advance practice roles. And when you’re in advance practice, it is obvious that diseases and symptoms are very complex. And there’s a great deal of overlap between the biological underpinnings of any given symptom, for example fatigue or depression, or pain. There are biological underpinnings [that] overlap across diseases and across populations. And so being able to look at the complex interactions, both from seeing it in real life as a clinician and then thinking about the mechanisms, has made symptom science jump forward. And we have to connect across diseases and across populations to ask questions that are complex but still patient focused. Maybe the best way to describe this is that ultimately it’s personalized healthcare – that includes patient’s perceptions of his or her symptoms as well as the individual context of that symptom, his or her genetics and epigenetics – all are available to us now – these huge opportunities to pull together these complex pieces that will allow patient care and prevention and reduction of symptoms to really be individualized in a way that we never had opportunity to do before. And never even had a perspective of how to think about this potential!

Question 2. What are CDEs and how will consensus on CDEs be attained and their use actualized?

To listen, click here.

Common data elements (CDEs) is a broad umbrella, and it includes measures of symptoms for example – so screening forms, questionnaires – different types of ways to get at individuals’ symptoms. So it does include measures. But, common data elements are more than that. It is any pieces of data – all pieces of data – that are gathered in a study that can be shared. For example: demographic data is a common data element. You can have demographics on gender, age, socioeconomic status, race, ethnicity and a number of other pieces of common data elements that are demographic in nature.

So those are two types: demographics and measures. But then it goes beyond that and it can be clinical indicators. So you can have across populations: hemoglobin A1C, or brain imaging data, genetic data, epigenetic data, telomere length. All of these pieces of information that are gathered within one study can be shared if they are coded the same and available to other researchers. These pieces of information can be shared across studies, across populations, across disease conditions. For example, you can have individuals looking at telomere length, the marker of chronic stress exposure. And you can have those measures in a population of caregivers of Alzheimer’s patients or family members who are caregivers. You can also have telomere length data available for mothers who care for children with cystic fibrosis, or, for patients with heart failure. And these different populations of study participants or patients could be 90 years old, or they could be 12 years old. Yet some of their symptoms can be the same or they may be different – and you could look at the impact of common data elements, the measures, questionnaires you use, the age, the gender, the socioeconomic data, the clinical markers, the brain imaging information, the epigenetics, the genetics. You can share these common data elements between studies, between patients with different conditions, between many different levels to evaluate what’s similar and what’s different, for example, across gender in patients with different diseases.

Common data elements are those bits of information that we use to keep about just one population, one small study – that now, if they’re coded the same and individuals have access to them, can be shared across populations, diseases and studies.

Now in regard to your question on how can consensus on CDEs be actualized? Well that’s difficult in some ways because many of us use questionnaires, for example, that we have used for a long time and they might be (I’ve heard the term used – legacy surveys or questionnaires) “legacy measures.” And so it is sometimes difficult to give up a legacy measure that you have used for a long time and start using a different measure for that same symptom for example. There are reasons that people don’t want to give those up. You can refer back to your previous research if you’re using the common tool and common measures as opposed to not having any standard that you could go back. But the benefits are that then others will also be able to build on your research, extend it, and ask new questions – more complex questions.

So how does that consensus happen? How is it built or agreed upon? Well I think NIH has done that and many institutes or have done that already. It seems that the process is generally that individuals are brought together to perhaps discuss the idea at the earliest stages and then put it out to the community that will be involved, to get input, get feedback, get ideas going back and forth. Do this respectfully and as an inclusive group not exclusive, hear all points of view and work towards identifying the key common elements that studies can share, or, should be encouraged to share. And then perhaps there still could be other measures or tools that an individual researcher wants to include in his or her own research. But adding even just a few that across studies, for example, perhaps across centers that are all aiming towards the same research goals – like self-management centers or cognitive centers – having some common data elements across all centers that have been agreed to by consensus through mutual discussion and respect, and analysis of the available literature. Using these common measures, then, can be added to supplement other measures that people still want to use (some previously studied measures in their own populations). So it will take consensus. Consensus will take development, it takes time, it takes inclusion, it takes in listening to people and then it takes identifying the key pieces of information that most people will agree can be shared across studies.

Question 3. What challenges arise when nurses try to translate their findings into policy? How will the new future in symptom science described in this article address those challenges?

To listen, click here.

The challenges nurses face when attempting to translate their findings are not just unique to nursing. But one piece might be that we often have small sample sizes, especially if we’re interested in unique questions or populations, the sample sizes might be small. And so in the past when everyone was just doing research individually, it was difficult to change policy with sample sizes of 50 or 60 or 100 or 160. But now the opportunity to share data across groups by the use of common data elements and hopefully someday a common data repository that individuals could have access to. Being able to share that sort of data across populations gives power to our own smaller studies [so] that we can start asking bigger questions because we can add to our sample size. The power is improved. So by this way, we will have a chance to change policy.

In addition, as discussed in our manuscript, we will be able to ask more complex questions. For example, previously in our research, even though as nurses we knew that the expression of symptoms depend on the context for the patient – whether the patient is experiencing them at home versus in the hospital, or has his or her partner with them makes a difference, or, whether they are out with their grandchildren that day, or staying at home alone. Context matters. But until the time of big data, until we had the tools to analyze symptom outcomes and patient reports as part of a big data set, it was very difficult to influence policy because we couldn’t include context and how important context is into the presentation to try to affect policy. But now that we can address something like context by big data usage and common data elements, we have a chance, really, to impact patients in ways that are very very meaningful.

Also, previously we considered perhaps one aspect of an intervention, for example, patient satisfaction. But now, having access to other data sets that we can merge with, for example, that one outcome (patient satisfaction), we can now merge that with big data sets on hospital readmission, or, costs to the consumer or to the state. You can merge those data sets now. We will be doing that, and, especially if we code them and have access – common data registries. We will be able to ask those very very complex questions and answer them in ways that can lead to policy change.

So using big data – and that was one of the underpinnings of this discussion – big data will allow us to consider other contributors to patient outcomes, to symptoms, to satisfaction and self-management. We can consider these for larger impact, and so we will have a greater success in actually changing policy. When you can bring in more stakeholders by merging data sets that will become available, the impact of our research grows.

Leadership Interviews – “3 Questions” – Aging in Place – TigerPlace

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

As the population of the United States continues to age, we face numerous challenges in health care delivery systems that go beyond health services and impact supportive and appropriate housing issues as well. Most Americans want to age in place, that is, stay in their own homes as their abilities wane and health needs increase. But ideal housing is not easy to find and retaining independence is difficult. Our systems need to think differently about the organization of health and independent housing services than what is available for most elders today.

With the federal government tackling the cost and quality of health available to citizens, nursing as a profession needs to pay attention to the discussion. Independent housing, aging in place (AIP) and the optimum packaging of supportive services need creative solutions with sound evaluations to perpetuate what works and model outstanding programs. Following legislation to test the AIP model In Missouri, the Sinclair School of Nursing at the University of Missouri, partnership with Americare Systems, Inc., built “TigerPlace,” a senior housing facility with care coordination as the centerpiece.

The March April 2014 issue of NURSING OUTLOOK describes the statewide evaluation of the continued success of TigerPlace and the registered nurse (RN) care coordination model for long term care. Dr. Marilyn Rantz discusses here how this model has evolved over time and its successes can be replicated in other states.

Marilyn Rantz, is Curators’ Professor and  Helen E. Nahm Chair at the University Hospitals; and Clinics Professor of Nursing and Executive Director for Aging In Place and TigerPlace. She is also Associate Director for the Interdisciplinary Center on Aging, Sinclair School of Nursing, University of Missouri.

For links to the Aging in Place in Missouri, click here:

We invite commentary that is thoughtful and provocative! Join the online dialogue!


Click here for the TigerPlace website”:

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN

Marilyn J. Rantz, PhD, RN, FAAN

Sinclair School of Nursing at the University of Missouri

Question 1. What will it really take to make senior housing options, like TigerPlace, to “spring up” across the country so the benefits of cost and quality outcomes demonstrated in this state evaluation are realized nationwide?

To listen, click here.

The key, from my point of view, is to have a funding mechanism for RN care coordination. What we found in our state evaluation at TigerPlace, is that the corner stone is care coordination. It needs to be done by a well-qualified nurse, and we built TigerPlace around those ongoing costs of health promotion: we bundled the cost of health promotion; we combined a 24 hour nurse on call, wellness center hours that are open several times per week, and four private visits from a nurse per year in your home; and organized exercises class. Those are really health promotion. We do a class called healthy steps and another class on Tai Chi and Yoga – lots of strength building, those kinds of focuses for health promotion classes that are movement oriented – because we know that if people keep moving it really helps them promote their health. We combined those costs, bundled those costs so that there’s a small charge that is combined into the monthly rent of everyone’s apartment. In TigerPlace, the monthly rent also includes meals, housekeeping, and transportation – those amenities of living in a typical assisted living setting, and also in a lot of independent housing settings. But we put the health promotion package in there too and that small investment really helps promote the health of all the people who live there, and it results in a lot of major improvements surrounding the physical function, the mental function. And the declines that typically we see through the end of life are shortened, to a shorter period of time at the end of life and people can be really functionally active through the end of life. It is really wonderful to see the outcomes of lower costs overall – we save about $20 thousand per year on the cost of typical long term care, nursing home care when our residents would qualify for nursing home care. That cost savings is really helpful for them and their families. But, more importantly, they have a better quality of life and better function through the end of life.

Another thing that it’s going to take is: we really need to learn how to used Advanced Practice Nurses and other qualified care providers under the new CMS guidelines and payment mechanisms for complex chronic care coordination and also for transitional care management services. We now have CPT codes. Those codes we will put in the document that goes along with this narrative. Those codes are relatively new on the scene for us to use, and we have not at TigerPlace, tried to use them yet for billing purposes for an Advanced Practice Nurse. So we would really welcome other people who have been successful at billing through those codes. I suspect that we can use that mechanism and help promote TigerPlace concepts across the country using that payment mechanism.

The other thing that would be very helpful to happen across the country is the policy work that needs to take place, state by state, to enable the construction of elder hosing that allows people to stay there through the end of life with this health promotion focus. (Because) you really can’t continue to do business as usual, forcing people to move from setting to setting to setting because of the licensure and regulation across those settings. Typically, one is forced to move from senior housing, to assisted living to nursing home, because of the state and regulation. But, what we did in Missouri is work through those with our Division of Aging and also passed legislation that enabled us to license the care and NOT the setting. Although, in the end, we ended up licensing the building as intermediate care, so that people could use their long term care insurance – that was a piece of the puzzle that people had found really helpful. But we still have the care provided under the licensure of home care and that seems to be a really sound approach than focusing on making people move from place to place to place.

Question 2. What can organized nursing do to enable the “springing up” of TigerPlace concepts around the country?

To listen, click here.

A major initiative that needs help across this country that would facilitate this is APRN unrestricted practice. We really need unrestricted practice in every state in this country. That needs to happen. I know that organized nursing nationally has been focusing on this, and helping states one by one change their regulations and their nurse practice acts to enable unrestrictive practice for advance practice nurses.

We have restrictive practice in this state, where collaborative practice arrangements are required and some onerous review processes as well as onerous limitations on the distance once can be from your collaborating physician. We have also done an analysis of the health outcomes in our state and health outcomes in all states comparing restrictive practice guidelines regulations with the health outcomes and then hospitalizations of Medicare and Medicaid patients and all of those are highly correlated in each state with restrictions on advance practice nurses. It is time that we get unrestrictive practice nation-wide. That needs to happen! And that will facilitate the development of these types of operations because we can have a funding mechanism with the Medicare availability under the CPT codes that I talked about earlier, which are the transitional care management and the complex chronic care coordination services. It would be possible then to have a funding mechanism available for APRN independent practices in these housing developments and facilitate this nation-wide.

That will be critical in something that organized nursing state by state needs to embrace. I know we have in this state. I know we have legislation pending, but once again, we are at that time of year and we have now been thwarted again by organized medicine and we are going to have another initiative next year. Hopefully we will be successful next year and try some slightly different strategies and hopefully that will have a positive outcome in this state. And I hope other states are doing that too.

The other thing that organized nursing can do is to continue policy forums where nurse entrepreneurial efforts are promoted and you demonstrate the cost and quality outcomes. We do that in the American Academy of Nursing through the recognition of Edge Runner programs. TigerPlace and the Aging In Place research that has been done at the University of Missouri is an Edge Runner program. That helps to promote new modes of care that hold the answers for many of the complex care problems and cost and quality programs that we have in health care across the nation. Nursing can take the lead, nursing has many of the answers and we can bring other disciplines to the table.

Question 3. Do you have any advice for others wanting to replicate or build on what you have learned in the Aging In Place evaluation at TigerPlace?

To listen, click here.

You know, that is my goal! We have done consistent evaluations, and what we had wanted to do in our state demonstration project is lay a good foundation of data as well as a good foundation of materials for people to use to be able to build on what we have done. We have been very careful to document all of the evaluations and publish those. We have been very careful also to document process descriptions of how we went about doing different things and the major components of The Aging in Place project and particularly building TigerPlace. We have a compendium and lots of information about Aging in Place on our website. You can use those materials and we will work with you, too, as you use those materials, but we have lots of that on our website.

The other thing that we did that I think works really well: in fact at lunch today, I am going to Jeff city our state capital and meeting with state regulators. You have to have a relationship with your state regulators. Develop a positive relationship, maintain that positive relationship and work with them because they want to see that projects like this succeed. They will collaborate with us. They will work with us. They have the same goals in mind of helping older people, of any population that you want to work with, but these are particularly people who are focused on older adults. They want to see that people get the right care and services, so they’re open to new ideas. Develop those relationships and figure out how you can gain their cooperation to do projects like this within your state. I think some states will need very little change, if any, to be able to just go ahead and duplicate TigerPlace within your state, and, other states will require some adjustments in state statute or regulation. We had to adjust statute and regulation in this state to enable its construction, and it’s flourishing. So, I really want to work with people and we are working with some people, but it’s important to have the regulators and have a positive relationship with them as you are developing this.
The third thing is that we have prepared the operational materials too, to help others implement this idea, particularly the concepts of care coordination in senior housing settings. Right now we are in discussion with the College of Nursing at the University of Arkansas for Medical Sciences in Little Rock and they really want to replicate the Aging in Place model. So we have got really good potential working with that college of nursing to be able to replicate what we have been able to accomplish here at TigerPlace. Particularly care coordination and doing another key in our model of care is doing variable billing on the costs of care, so that as people need more services, we put services around them, and withdraw those services as they become independent again. That controls the costs. They are very interested in helping to replicate this model and particularly to be able to work on the changes in funding and the variable billing for funding.

It has been a delight to be able to be a part of the Aging in Place Project here at the University of Missouri. I have spent almost 20 years working on this project now. We started in 1996, and I can tell you it has been some of the most exciting work that I have been able to do. Sometimes, I very much feel that this is the work that I was intended to do and that is why I was put here.

Leadership Interviews – “3 Questions” – Immigration Policy and Internationally Educated Nurses

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

Immigration policy plays a critical role in the economy and workforce issues related to nursing. With the undersupply of nurses in the U.S. and worldwide education of nurses, the flow of nursing professionals has provided a steady stream of professionals in our hospitals and health care communities. We as a country have relied on internationally educated nurses (IENs) and our professional policies have worked hard to keep pace with establishing global standards for education and competencies that – at least – do not interrupt the flow.

With the federal government tackling the issues of immigration in general, nursing as a profession needs to pay attention to the discussion that generally sounds like topics related to undocumented workers when, in fact, a highly educated group of nurses may be part of that discussion. With the intellectual capital at stake, and with the U.S. no longer the country of choice for some immigrating nurses, we need to be vigilant in balancing the flow of IENs and hospital needs with local economic forces.

The January February 2014 issue of NURSING OUTLOOK tackles the multiple aspects of immigration and the internationalization of markets for goods and services, including the nursing workforce. In this interview, the lead author of the article that describes historic and current trends in countries that have often supplied the U.S. health care system, Dr. Leah Masselink adds commentary to the articles published in Nursing Outlook and provides historic backdrop to the international power of nurses and the intersection of IENs and immigration issues.

Leah E. Masselink, Ph.D., is Assistant Professor of Health Services Management and Leadership at the George Washington University School of Public Health and Health Services. Dr. Masselink joined the HSML in July 2012. Before coming to G.W., she earned a PhD in Health Policy and Management from the UNC Gillings School of Global Public Health and completed a postdoctoral fellowship at UNC School of Nursing. Her work focuses on internationally educated nurses and nurse migration in the Philippines. She has served as a consultant and assisted on the Health Workforce Development team for the USAID Health Care Improvement Project.

For links to the recent Senate and House legislation:

See the full article published in NURSING OUTLOOK at:

Masselink, L. & Jones, C.B. (2014). Immigration policy and internationally educated nurses in the United States: A brief history. Nursing Outlook, 62(1), 39-45.

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN

Leah MasselinkLeah E. Masselink, PhD
Assistant Professor
Department of Health Services Management & Leadership
The George Washington University
School of Public Health & Health Services




Question 1. The article briefly mentions that internationally educated nurses (IEN) hiring patterns in the U.S. reverberate in source countries like India and the Philippines. What has been the political and social impact of the reduced demand for IENs in these countries after the Great Recession?

To listen, click here.

In India, nurses historically have earned very low wages and worked under poor conditions not unlike other sending countries. It historically hasn’t been protested or hasn’t been a much of a problem because usually nurses at least had nurse migration as an opportunity to get out of poverty. With the reduced demand for nurses worldwide (India sends nurses to US, but also to the Middle East, and the U.K.), so the reduced demand after the Great Recession led to protests and strikes in India. The Nurses organized themselves to demand better wages, better working conditions. They protested against bonded service at some hospitals meaning that they were obligated for certain periods of time, including some very dramatic scenes where nurses would go up on the roof of a hospital and threaten to jump. The strikes happened in many states in India but much of the activity was centered in the state of Kerala, which has a long history of nurse migration. The nurses in Kerala have actually formed some of the first independent nurse’s unions. And the state is actually doing now some investigation trying to put some provisions in place to limit work hours and abolish the bonded service.

So the Philippines is in somewhat of a similar situation except probably even more focused on the U.S. market. The U.S. market is somewhat of the gold standard where most nurses are aiming to go. There is a huge production aimed at U.S. market. This overproduction led to thousands and thousands of unemployed nurses in the Philippines when the demand went down in the U.S. So, a few things happened: the nurses were working in private institutions as volunteer nurses who some of them actually had to pay fees to work in hospitals for clinical experience hoping that it would pay off later rather than being paid. This has been outlawed but it is a little unclear whether it is still going on. The government also tried to take some action: started a temporary program for unemployed nurses to send them to remote areas where they could both fill some needs and also get real employment experience for the future; and, has also sponsored some specialty certification programs for nurses to improve their employability in the future. And another really fascinating development has been the formation of a nurse’s political party, which included the election of a congresswoman who is a nurse, who is the former president of the Philippines Nurses Association. That party’s platform includes a lot of activity around protecting nurses fighting exploitation, both domestically and international recruitment, raising salaries and so forth. In both of those countries nurses concerns are a political issue in ways that we probably are not aware and that they certainly are not in the U.S.

Question 2. The article suggests that nurse leaders and hiring organizations bear much of the responsibility for ensuring that hiring of IENs is ethical. Are there any more centralized efforts (regulatory bodies, etc.) in the U.S. to protect IENs and source countries?

To listen, click here.

In the U.S, there are several voluntary efforts to protect IENs mostly headed up by either professional associations such as the American Staffing Association and the American Association of International Healthcare Recruitment, which have adopted codes of ethics which are conditions of membership in those associations. A broad variety of other associations have policy statements also on ethical recruitment including the American Organization of Nurse Executives (AONE). There are a few innovative efforts that try to go a little bit farther including the Alliance for Ethical International Recruitment Practices, which is actually run here at G.W. It has a voluntary code of ethics that recruiters can endorse and seek certification as ethical recruiters. Then certified recruiters are monitored for compliance with the code. One additional step that that organization takes is also seeking to promote corporate social responsibilities or efforts to give back to low income source countries.

Other governments and international bodies have also adopted voluntary codes, most all of these are voluntary, including the World Health Organization. The Code of Practice on International Recruitment encourages member states: (1) to avoid recruiting health workers who have obligations in their home countries, (2) to provide opportunities for training and skills transfer, and (3) to treat migrant workers fairly including compensation and legal protections etc. The U.K. also has a broader code of practice for its National Health Service (NHS) recruitment which is based on the WHO Code. NHS employers are “commended” to use only recruiters that comply with that code and internationally educated health professionals must have access to the same legal protections training compensation etc. Another provision that is interesting is that developing countries are specific – there’s a list – and they must not be targeted for recruitment unless they have entered in to an explicit government to government agreement with the U.K. So obviously this type of thing is a little bit more difficult to imagine in the U.S. because our health system is a bit more complex than a national health system. So there are efforts, but most all of them are voluntary.

Question 3. How might current or future immigration policy changes (e.g. comprehensive immigration reform) affect internationally educated nurses?

To listen, click here.

This is obviously still a work in progress, as of today. But the Senate actually did pass a bill back in 2013, so at least we can examine some of the provisions. Two categories were really affected, one was H1B Visas, which are increased quite a bit under that policy. The increase could create more opportunities for nurses but the impact is a bit unclear because H1B has not been used very much by nurses in the past. It’s intended for skilled immigrants who have bachelor’s degrees, and since nursing jobs are not necessarily posted with bachelor’s degree listed as required, those jobs are not always H1B eligible. The other category is the employment based visas, the immigrant visas. That policy proposed a shift to a merit based system rather than a family based system with points being awarded based on skills, education experience and English language proficiency. So nurses would likely compete strongly under this system, especially those with bachelor’s degrees or higher, as many IEMs do have, especially from the Philippines, which actually most all of their programs are run as BSN programs.

Another provision related to EB employment based visas is that is also seeks to clear the backlogs of visas and eliminates country specific caps, which has historically affected nurses from large sending countries such as India and the Philippines. The House had bills that died in Committee, the House Judiciary Committee and Homeland Security Committee, so they didn’t make it beyond that. But actually the provisions for skilled immigrants like nurses were fairly similar, adding H1B visas and employment based visas. No new visa categories were proposed in either of these pieces of legislation and the House bill also paid less attention to the existing employment based visa backlog. The House just now has unveiled a draft framework again, mostly focused again on undocumented immigrants, but it appears as if the idea of expanding H1B and employment based visas would most likely find support in the House as well. It remains to be seen how that will all turn out.

Follow-up Question. Where do you see this going?

It’s starting to turn around now and there has been now more interest again in trying to come to the U.S. So I think that they are beginning to see hope. I think there is a lot of interesting and probably developments that we cannot even imagine with the Affordable Care Act and future economic changes. It is a little uncertain, but nurses in some of these sending countries are beginning to look at the U.S. again as a destination.

Leadership Interviews – “3 Questions” – Transition: Adolescents and Emerging Adults with Special Health Care Needs

Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

Although our health system has made great strides in clinical technologies, it has been largely ineffective in service delivery for the large and growing population of individuals with disabilities and children with special needs. While the field of pediatrics has addressed issues of children and families when facing a life of limitations or health problems, as the children age through adolescents and transition into adulthood, the service delivery system and fragmentation of adult services serving this population continue to create barriers to care. It is time for organized nursing to step up and champion the research and practice needed to lead the changes necessary for minimizing disparities and facilitating transition.

In this interview, the lead author, Dr. Cecily Betz adds commentary to the articles published in Nursing Outlook and advocates vociferously for nursing to get engaged in the research and practice of this emerging science. She discusses how nursing has a unique opportunity to make positive differences in all adolescents and emerging adults with special health care needs. Nursing needs to be visibly present and the time is ideal!

Cecily L. Betz, PhD, RN, FAAN is an Associate Professor, University of Southern California (USC) Keck School of Medicine, and the Department of Pediatrics and Nursing Director/Research Director at the USC UCEDD at CHLA. She is also the Director of the Spina Bifida Transition Program. For over 20 years, Dr. Betz has been the Editor-in-Chief of the Journal of Pediatric Nursing, and a prolific writer and speaker on issues pertaining to children with special health care needs. She was the co-chairperson of the American Academy of Nursing (AAN) Expert Panel on Children, Adolescents and Families (CAF) and co-author of the AAN-CAF Guidelines for Health Care of Children.

See the full article published in NURSING OUTLOOK at:

Betz, C. L. (2013). Health care transition for adolescents with special health care needs: Where’s nursing? Nursing Outlook, 61(5), 258-265.

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN


Cecily L. Betz, PhD, RN, FAAN

Associate Professor, University of Southern California

Keck School of Medicine, Department of Pediatrics

Nursing Director/Research Director, USC UCEDD at CHLA

Director, Spina Bifida Transition Program

Editor-in-Chief, Journal of Pediatric Nursing

Question 1. Why did your team select this question for investigation?

To listen, click here.

Our team was interested in looking at the needs as we understand it from an empirical perspective. What were the concerns of adolescents and emerging adults with special health care needs as they transfer in, and transfer to adult care, but also as they transition to adulthood? This is a particularly relevant issue as somewhere between (the estimates are not exact) somewhere between 500,000 and 750,000 emerging adults with special health care needs actually transition into adulthood. Those are enormous numbers. And in fact, for a couple of groups, adults with cerebral palsy and those with congenital heart defects (actually the adult numbers are greater than those for children and adolescents). So that is a very significant shift in the way that health services have been conceptualized.

So we wanted to know more about how this phenomenon is affecting adolescents directly. That was one of our questions that we had as we looked at the literature. What we did (and the details of the process of our systematic review are identified in our article), however, we ended up ultimately with 35 articles that were appropriate for our review. There were a couple of things that we found that were unexpected and that was in terms of the research designs and methodologies.

First of all, we found that it was hard to really locate or identify just what were the age groups that were studied. There seemed to be very diverse sampling techniques used. So we have some studies (approximately 9 of them) that looked at those adolescents between the ages (early adolescence and emerging adulthood) 9 to 21 who were sampled who were actually going through the process. Then there were about six studies where there were combinations of adolescents and emerging adults who were currently undergoing transition or in the process itself, and those who had been through the process. And then lastly there was a group sampled who provided retrospective impressions and perceptions of their experience. What was particularly interesting to us was that of the studies, (there were 35), 10 of those were conducted in the United States. The majority – about 60% of the studies – were conducted internationally, and their system of care is very different than the U.S. system of care. So that was an underlying factor to consider as we were analyzing these responses of adolescents. And interestingly too, when we looked at what did we learn from the adolescents in the U.S., which would be most pertinent to nurses in the states, they sampled actually rare populations for the most part: adolescents and emerging adults with solid transplants, those with sickle cell disease, those with JRA, and not some of the other populations of adolescents and emerging adults with special health care needs that you would typically think would be part of this systematic review – that you would find in these studies. And interestingly, several groups of teams that were part of our analysis from those recruited in the states were those enrolled in the mental health system, some recruited from school settings, and foster care. So actually it was just half of the studies of those that were reviewed that originated in the United States were conducted in clinical settings. So in a sense we know very little.

Question 2. Were there unexpected findings generated from your systematic review?

To listen, click here.

There were several of them:

1. First of all, we found that the findings of this systematic review were very similar to those reviews conducted earlier, approximately 10 years ago. It reflects, still, an area of practice and an area of research that are in the seminal stages of development.

2. The majority of studies that we reviewed, approximately 60% were conducted internationally. And of those studies conducted in the United States which were 10 (about a third), half of those studies were conducted in clinical settings. So in essence we really don’t have much data to inform us as to what really the needs, the experiences of adolescents and emerging adults are as it pertains to this very important process of transfer to adult health care and transition to adulthood.

Other things we found too that are important to consider when we are talking about our findings was the fact that with the exception of one study, which was a program evaluation, they were all descriptive designs. There were problems with psychometrics. For example, if an interview schedule was used, the process for developing that interview was not really described. Tools with weak psychometrics were used. But all of this reflects the emerging science and practice of healthcare transition.

As we looked at this, there were several areas that emerged, themes that were evident. And those were the recommendations for healthcare transition planning (what was important to them):

1.  They needed more information and more information not only about their condition but also in terms of clinical management; self-management was considered to be very important; more information about the adult system of care. And importantly too, when you’re thinking about working with adolescents in terms of clinical implications, we sometimes make assumptions that are not necessarily warranted developmentally when we’re talking about adolescents and emerging adults because it’s more difficult for them developmentally to conceptualize.

2. Other areas that we found were the adolescents own reflections of their transition experience in terms of: Was it a positive experience? Was it an experience that was fraught with challenges? And we sort of found across the spectrum perceptions that for some, it was a very positive experience, and some would describe it as transformative. Others found it more difficult. They felt unprepared. And I think you can go back and look at how those experiences might inform us as service providers how to better prepare adolescents and emerging adults for their transfer of care to adult care and also their transition to adulthood.

3. Another theme that we extrapolated from these studies was the obstacles and problems. Some of these really related to the changes in the adult system of care in contrast to what they were obviously exposed to and experienced in the pediatric healthcare system. For example, many of the services that they had as pediatric patients – OT, PT, nutrition services – were no longer available in the adult system. The adult system was organized differently, it looked different, it wasn’t as inviting or warm. Those  were issues that had they been better prepared it may not have been so difficult for them to navigate. Again this goes back to this theme of improved and better preparation for what are going to be very significant changes.

4. Another theme was the expectations related to the eventual transfer to adult care. For some it was so ambiguous they were fearful about: What is this going to do to my own health status? Will I anticipate some serious health changes with my condition? Is my condition going to deteriorate and how will that affect then my lifestyle? Some were very worried and insecure. If we look at this, we can see that having very directed, thorough and consistent preparation to support adolescents and young people as to what to expect, and to talk to them very candidly about what the future holds for them, would be helpful to them.

5. The final theme was becoming self-reliant with their special health care need. It was issues related to their concerns, or perhaps their confidence as it pertained to how they would manage their health needs and frankly their lifestyles. However, evident throughout, and this was actually why we chose the title “voices not heard,” was that adolescents and emerging adults throughout all of these studies that we reviewed, it was really evident that they weren’t being heard. That they weren’t the full partners!

Question 3. What are the research implications of this work?

To listen, click here.

There are some implications based on what are findings were. Some of this is predicated on the fact that this is an emerging area of practice and research. There aren’t at this point in time and evidence based guidelines to assist providers in terms of development of services and perhaps the discipline that has advanced more thinking and recommendations in this area has been pediatrics.

There really hasn’t been much in terms of recommendations or practice guidelines from the other disciplines, nursing being prominent in that regard. And until we have the evidence needed to help direct us in terms of what is helpful, what will support adolescents and emerging adults, we’re going to continue to rely on expert opinion in terms of the evidence that exists. And this certainly too goes back to the need for more systematic and rigorous research designs; that we have designs that are quasi- experimental, randomized controlled trials, that really test the effectiveness of various intervention models.

This is an ideal role for nursing not only in terms of development of practice models but certainly in terms of conducting research studies that contribute to the body of literature and contribute to the science that is developing in this very early stage of practice. This is an ideal area of practice for research endeavors for nurses to undertake. There have been few studies conducted by nurses in this area and nurses can serve in very important practice roles and also in program development affecting models of care that will assist adolescents and emerging adults to transfer and transition to adulthood.