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Leadership Interviews – 3 Questions – Living Legend Ann Wolbert Burgess

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

2016 American Academy of Nursing Living Legend – Ann Wolbert Burgess

Nursing leaders of our times are recognized by healthcare professionals and the public for their outstanding contributions not only to our discipline, but to the health of the population. The American Academy of Nursing recognizes its distinguished leaders who have given service over their career to a group of selected individuals known as the American Academy’s “LIVING LEGENDS.” In 2016, these recognized scholars, policy makers, educators, researchers and truly dedicated nurses received this highest honor and addressed the audience with humble thanks and inspired all of us in the room with their living stories. For future nurse leaders who may not have been in the room, we believe that their personal viewpoints about leadership ought to be shared online in their own words. This second interview is with Dr. Ann Wolbert Burgess, Professor of Nursing at Boston College.

Dr. Ann Wolbert Burgess is internationally recognized for her contributions in the assessment and treatment of victims of trauma and abuse. Her research has provided significant insight into the links between child abuse, juvenile delinquency, and the perpetrators of serial offenses. Her public service on numerous national committees and councils for victims of serious trauma, including sexual abuse in a variety of settings, has culminated in work that has been applauded at many levels of government and her courtroom testimony has been described as “groundbreaking.” Her focus that includes elder abuse, cyberstalking, and internet sex crimes has been recognized in forensic science classrooms nationally. At the heart of the work is her compassion for victims and victimization on which she has built a distinguished career, receiving numerous honors and numerous highest awards including the Sigma Theta Tau International Audrey Hepburn Award, the American Nurses’ Association Hildegard Peplau Award, the Sigma Theta Tau International Episteme Laureate Award, and named a 2016 American Academy of Nursing “Living Legend.”

Dr. Burgess’ leadership continues in her active work with other researchers and scholars at the Boston College. One of her two most recent projects is the College Warrior Athlete Initiative Project funded by the Wounded Warrior Project (click here for video). The purpose is to assist our nation’s wounded service men and women transition back into civilian life by partnering with an athlete in active physical exercise and socially supported learning activities. We asked her about the project and advice she might offer aspiring nurse leaders who seek ways to channel personal compassion into meaningful research and scholarship.

We asked her to elaborate on the College Warrior Athlete Initiative Project and her leadership lessons in forensics by answering 3 Questions!

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

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

Ann Wolbert Burgess

2016 American Academy of Nursing (AAN) Living Legend

William F. Connell School of Nursing

Boston College

 

 

Question 1. Can you tell us about the Wounded Warrior Athlete Initiative Project and how you found the connection with your own body of work and the victims of military trauma?

The College Warrior Athlete Initiative or what we call in shorthand the Wounded Warriors Program is a nurse led health promotion program for wounded vets. It’s our way of having academic nursing to be a part of the wounded warrior trajectory back to health. There had been some discussion about how we, who are in academic situations, could be helpful. What happened is Ada Sue Henshaw, who was Dean down at the Graduate Nursing Program of the Uniformed Services University of the Health Sciences (USUHS) in Bethesda had taken on a high profile military issue for nursing to take the lead – and it was what is called “military sexual trauma.” And at the time that she contacted me it was getting a lot of press as well as Congressional attention. She knew of my clinical and research work in the area of sexual trauma. So she applied for a budget to fund a visiting professor to come to USUHS, advertised it competitively, I applied! And that’s why I got down to USUHS.

Now once I was down there working with Dean Henshaw, I spent some time with Dr. Sue Sheehy who was on faculty. And interestingly enough Sue had been a military nurse and had spent time working with returning wounded warriors coming into Walter Reed Hospital, which is right down there on the campus. And she had made a very compelling point that once these wounded warriors were discharged back home, there were very few resources, often, for them to continue in any kind of rehab program. Now that’s in more of the rural areas, certainly not in the major cities. But she was kind of pondering that and had been thinking about it, and realized that every small community would have access to a nursing program. That’s one thing that we certainly have done very well is that we have our nursing programs scattered nationwide.

So she thought why not test the nurse led program using the “battle buddy” system. Now, the occupational culture of the Army’s “battle buddy” concept refers to an attitude of support during tough times and had at that time never been applied to veteran health promotion. The big health problem outside of any of the medical or psychiatric diagnoses were nutrition for weight control, and strength decline. These seem to be two of the big problems that wounded warriors were having. So, with Sue, there was a decision to design a program with an athletic department and a nursing department to pair a veteran with a college student athlete for an exercise workout program that would also include wellness classes, and lunch – a nutritious lunch.

Now the next step is that Dean Susan Gennaro here at Boston College was able to offer Dr. Sheehy a visiting scholar position. Sue came up, we wrote a grant, submitted it to the Wounded Warrior Project and was one of three projects to be funded. That’s how it all got started.

We just finished our two-year program. We had a total of 50 veterans between Boston College and we had one satellite site at Norwich University. So we had 38 males and 12 females between the ages of 25 and 54, of seven cohorts. And they lost a total of 232.8 pounds and showed very positive changes in their BMI.

The way I got involved is through the military program and these were veterans who were also victims, if you will, of a war, and it seemed to be kind of a natural fit for me to become involved. And our goal is to extend the program to other nursing programs across the country. It’s very low-cost, highly rewarding, certainly for the wounded warriors, certainly for the students, certainly for the faculty who participate, the University and the community. In all it’s a win-win.

Question 2. What lessons did this project and other work you have done teach about nursing and what nursing can do?

Well I think there are several lessons that we can talk about. One is certainly to identify a high profile issue where nursing can take a leadership role. That, I think is critical. For example, one is the current opiate crisis. I’ve just finished analyzing data from over 300 cases where teens died by suicide. And so what we did was to look at the toxicology findings from the medical examiner’s office that identified the drugs in the teen’s system at death. And that’s important – for all that I’ve looked at the problem, nobody says what are the drugs that kids have in their body when they suicide? That will be from the data – that will be a recommendation for nurses on how to prevent teen suicide where prescription drugs and mental health is involved. So I saw that as an example of a high profile issue where nursing really can take a major role…I send that out for all of nursing!

Now a second high profile issue from my perspective is nursing staff violence, especially in the ER. How are we training or responding to violent patients and visitors? Now I know that many are…as we read some of these incredible cases of shootings…I know they are doing that…but is there anything else we can do? And one experience I’ve had that I would pass on is: I was involved in analyzing, doing a psychological autopsy of a mass shooting in the community of Seattle Washington. And the police chief there convened a panel to analyze the shooting and then publish our report on his website for the community to understand. So that is again another place, when they have one of these horrendous cases, nursing should get in there and suggest this – that the police chief can do such a thing. Out of Seattle, they found that very, very helpful.

And a third area I suggest is the cyber security of health records. Everybody knows that ransomware is hitting hospitals and nurses can be key in the solutions regarding records. I think that would be a huge area.

Now to take the example from their wounded warriors, nursing leaders know of nurses’ expertise and how to find them to consult on an issue. We have that published in our Academy notes. So Dr. Henshaw demonstrated that educators need to have a budget for visiting scholars or professors, whatever they want to call them, and also a budget for funding annual speakers. So that would be something that could be done – it doesn’t just have to be academics it can be in hospitals and so forth. And then have working groups on high profile issues. Then you can find some leadership for nursing. And I think that’s the way we get ourselves out in front and show what nursing leadership is.

So those are just some of the suggestions I had for how did I take the lessons learned from the Wounded Warriors project, as a model if you will, and transpose it to different topics.

Question 3. What is Forensic Nursing and what advice do you have for aspiring nurse leaders and scholars to be able to connect forensics with their specialty leadership goals

Well first of all, as a definition, Forensic Nursing is the interface of Nursing and the Law. So any time that a nursing issue, problem, case, etc. comes into a legal arena, that’s what Forensic Nursing is. So nursing has many areas, in fact, I can’t think of a single area in nursing that doesn’t have a potential legal issue to talk about. For example, the easiest ones are abuse cases, trauma cases, accident cases, they all come into the emergency department. That is the most logical place and that’s where, I think, a lot of Forensic Nursing started. My project did. We saw – Lynda Holmstrom and I – saw all rape victims coming into the emergency room over a one year period, and we took that data – and that’s what really kind of bounced my career into the crime victim arena. But I entered the forensic arena before there was such a title. We didn’t talk about forensic nurses back then. In fact I introduced the term and worked with Virginia Lynch as a pioneer in the field at the 1992 ANA annual meeting in Las Vegas. She was the one that really was the pioneer. And we were able to get that onto the annual meeting. So we date it back there.

But one of the official organizations, what we call the International Association of Forensic Nurses, which is the IAFN, was actually formed in Minnesota with the leadership of Linda Ledray and others. If you go to the Linda Ledray website, her definition is: ”by linking the clinical care with forensic care the result is better outcomes for patients” – and that’s Linda Ledray’s message.

And just to give you an example: One of the cases I helped with – because the US Attorney’s Office here in Boston needed a “forensic nurse” – they called me. And I helped by reviewing over 200 case files of meningitis cases where fungus had been introduced through a compounding center (and that was in Framingham Massachusetts). The US Attorney’s Office was handling it. The first trial just came about and I testified at that trial. But that was the case where it was (a) very unclean compounding center that was somehow…a fungus got into it…you could even see the fungus in the test tube! I mean I don’t know how people administering the steroid wouldn’t have seen it! But at any rate that’s just another example where people died – they needed a forensic nurse to be able to help them legally.

So my suggestion is nursing leaders need to be updated on forensics as it applies to nursing care. Nursing homes and even hospitals are facing a lot of what I call sexual exploitation cases, and nurses in risk management really need to know how to manage them. Two cases I was just called on this week: (1) one involved an ICU nurse taking photos with his iPhone of a patient’s breast and genitalia; (2) another case involved a nurse molesting a patient while under anesthesia and surgery was going on! These cases are publicly recorded on the Internet, so one of the things I try to do when I lecture on this is to give the actual cases – as it’s right there on the Internet for people to read! And we need to know how forensics can play a key role in this.

So those are just some of the cases and a definition of how I see forensic nursing as a potential in every nursing specialty.

Leadership Interviews – “3 Questions with Living Legends in Nursing” – Linda Schwartz

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

Nursing leaders of our times are recognized by healthcare professionals and the public for their outstanding contributions not only to our discipline, but to the health of the population. The American Academy of Nursing recognizes its distinguished leaders who have given service over their career to a group of selected individuals known as the American Academy’s “LIVING LEGENDS.” In 2016, these recognized scholars, policy makers, educators, researchers and truly dedicated nurses received this highest honor and addressed the audience with humble thanks and inspired all of us in the room with their living stories. For future nurse leaders who may not have been in the room, we believe that their personal viewpoints about leadership ought to be shared online in their own words. This first interview is with Dr. Linda Schwartz, Assistant Secretary of Veteran Affairs for Policy and Planning, who received the “2016 Living Legend Civitas Award.”

Dr. Linda Schwartz serves as VA’s principal advisor on all matters of policy, interagency liaison activities and strategic planning to enhance and promise the health of America’s 22 million veterans and their families. She is the former Connecticut Commissioner of Veterans Affairs (2003 – 2014) prior to her Senate Confirmation in 2014. She was a flight nurse and member of the United States Air Force, serving during the Vietnam War and following on Active Duty until 1986.

In her leadership roles, Dr. Schwartz was a strong advocate for issues related to homeless veterans, veteran suicide prevention and women veterans. Among her many awards and honors, she received the National Commendation medal of Vietnam Veterans of America for “Justice, Integrity and Meaningful Achievement”; the Legion of Honor Bronze Medallion from the Chapel of the Four Chaplains; Sigma Theta Tau’ International ARCHON Award “for her leadership and research on the human effects of exposure to Agent Orange.”

In a recent town meeting where she was asked to speak for the VA, Dr. Schwartz gave a response to a journalist known for his aggressive style that changed the tone of the meeting and the negativity in the room. In her poised but passionate response about a particular issue that is near and dear to her heart, she spoke to the audience with her nursing “voice” that said “we’re listening to you” and “this is a new day.” This short video captures that event and teaches nurses about talking to the press, but more importantly, shows how using opportunities to turn to the humanity of our profession can be a skill for nurses who aspire to positions of leadership to develop (click here to view video – courtesy of Elizabeth Leary, doctoral student, Yale University).

As a distinguished leader in nursing today, and with such significant service to country and discipline, we asked her to speak about nurse leaders using opportunities to educate the public about nursing as we face challenges today in health care. For future nursing leaders, we hope to inspire courageous young nurses to find their voices and seek opportunities to make a difference. Here are some of her words of wisdom:

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

Linda Schwartz, DrPH, RN, FAAN 2016 Civitas Award Recipient

American Academy of Nursing

Assistant Secretary of Veteran Affairs for Policy and Planning


 

Question 1. Awards for leadership are bestowed upon people whose achievements are clear to others. But perhaps some accomplishments from the award recipients are even more meaningful to them that are unrecognized. Can you share with us a past experience that describes from your perspective what others might learn about opportunities that cultivate leadership?

…I think probably saying that you don’t plan these things, they just seem to happen. And the real factor in this is to seize the moment, and be a risk-taker even if it’s just speaking up for your patients and then starting with better care, better programs. I think that naturally nurses are leaders in their own right but they just don’t really see that the things that are the very fiber of our profession are the real hallmarks of what a good leader is.

So, from my own example, I never really in my wildest imagination thought that I would be a veterans’ advocate. But as I saw how the veterans were being taken care of in the VA when I had to use it, I kept thinking there’s a better way to do this! and seeing that in fact a lot of veterans didn’t have the wherewithal to speak on their [own] behalf; and in actuality, that’s how I kind of merged into being able to use my background as a nurse, my dedication to seeing that the right things were happening, that the best was happening for our veterans. I didn’t really realize as I was laboring in this and working for the women who served in Vietnam – working for their recognition – that I was slowly becoming a leader. People had to actually point that out to me, where I was thinking, “well I’m just trying to do the very best I can to move this agenda.” So, you know the old saying that leaders are made not born? I think a lot of that is your investment of yourself into a goal or an issue, and all of a sudden you become a leader in that respect.

Question 2. Can you describe your work with some of the significant problems that you have come to know well from your career?

Let me just say that early on, I became involved with the veteran movement especially the Vietnam veterans’ movement, and the women veterans who served. I was struck by the fact that so many women veterans who served in Vietnam had strange and exotic diseases and were dying at a very young age – wondering what all happened to them, maybe in Vietnam. And at about the same time, being an advocate for having women and women veterans in research, I was contacted by a group that was actually doing a study on Vietnam veterans, and they were upset because women veterans were declining to be interviewed. This was probably the first study of the Vietnam Veterans Readjustment study.   My circle of friends were mostly women who served in Vietnam or in the military during that time, and this was an effort to try to get them to participate in a study that would actually do a better job of telling their stories or what was happening to them, and maybe to help unravel some of the questions I had.

But intead I became an interviewer for the study and my job was to try to talk people who had been selected to be subjects in the study – who had actually declined – and to talk to them about being in the study rather than not participating. That study was probably the first known health inventory for women veterans; it compared three groups of women – women who served in Vietnam, military women who did not serve in Vietnam, and a matched cohort of civilians. So, my question about health became almost like my passion because you just can’t start a study on Agent Orange and not get really into the nitty gritty of it.

And so, believe it or not, it became part of not only my study – my scholarly pursuits – but also I have a real passion for advocating for veterans and their families, especially for those who are having issues with health conditions associated with exposure to Agent Orange. So it was almost like a dual track of wanting to answer the questions but at the same time having the data, the information that would help answer those questions.

Question 3. What advice would you give to aspiring nurse leaders

For aspiring nurse leaders, I’ve always had a real special belief that nurses have a leadership role, and rightly so, because of the way in which we look at the world, the way in which we use data and information and facts. That’s a lot, not necessarily factored into leadership, per se, or to leading anyone or groups. So, for me, it kind of evolved, and starting out with wanting better conditions for veterans (which is a really vast and prolonged vista from which to choose many different avenues, actually). But the fact that I was a nurse, and wherever I went, and whatever I advocated for, I’ve always been one who believes that you should speak truth to power, even when it is not necessarily the easiest thing to do. When you’re challenging the system, just speaking truth to power really isn’t enough. You have to have your facts. You have to be very conversant in what’s going on with the issue that you’re addressing.

But I also feel that sometimes, for me, the bond that I have with the people I served with in the military is very strong and it doesn’t necessarily have to be people I actually know. It’s the people and understanding of the experience that people go through when they are in the military and keeping faith with them. I was lucky enough to know Virginia Henderson who is maybe is not as well-known today as when I was, when we knew her, it was the fact that she had defined nursing as being, doing for the patient what they cannot do for themselves if they were well and had energy, and all those things, that we have to be the voice of those who have no voice. And that’s kind of been my mantra. Because nurses can so well identify the issue and the arguments and the points that need to be stressed. It’s just the way we learn how to diagnose the problem and look for the solutions.

So, it’s a very natural part of nursing and I think many nurses, hopefully it’s changed, but back in the day that wasn’t something that people wanted to encourage in nursing – that you would be a leader. For me, this kind of quest to look for the justice of the situation: I had exquisite opportunities to be in the halls of Congress, to be before legislators and policy policymakers. And it is not because I said, “I want to be the leader” – it’s because my dedication to the veracity of the information and the authenticity of the information was very important. And often times that doesn’t happen when you’re trying to effect change in public policy. Sometimes the truth is the first victim of the situation.

In many ways, I believe that my nursing profession, my nursing practice, has been a wonderful way to frame my leadership style – that we listen to all people, we allow people to express their opinions, but at the same time our eye is firmly focused on the goal of what we’re trying to accomplish. And in policy and health policy, that’s health, but in some instances, like for example with veterans, sometimes it’s justice. So, I think it’s important for folks to remember why it was they came to nursing in the beginning, and if it was, as it was with me, to be sure to help other people – that’s a common theme. And it certainly gave me great courage to face some of these situations; and I can just say, [in] the film that you have of the symposium on Agent Orange, the emotions that were displayed by a lot of people in the room including some of the sons and daughters of veterans who, at first, had birth defects that are still a challenge for them today, to sit in that room and listen to them – it was listening just as you would listen to someone you were trying to help. And I think that is another aspect of nursing, that we are not necessarily adversarial, we are more of trying to find the common ground and a way forward. So, those are the leadership strengths that I think are natural or embedded in what we do as nurses. It’s just that maybe some nurses need a little confidence that, that also works once you are trying to accomplish other goals in patient care.

Leadership Interviews – “3 Questions” – Health Care of Our Veterans and Military

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

Healthcare of Our Veterans and Military

In 2011, First Lady Michelle Obama and Dr. Jill Biden came together to launch Joining Forces, a nationwide initiative calling all Americans to rally around service members, veterans, and their families and support them through wellness, education, and employment opportunities. Despite these initiatives that have provided resources to those who served our country, their healthcare has been the subject of numerous headlines and ongoing discussions that warrant nurses’ attention.

In an effort to bring back the “joining forces” momentum – remembering why we did this in the first place and to show the progress along the way – Dr. Morrison-Beedy offers her insights about the special Nursing Outlook focus on military and veterans’ health care in the September 2016 special issue. This series of articles in NURSING OUTLOOK provides a spotlight on initiatives that have taken place with military and veterans’ health over the recent past years. Launched from the Jointing Forces Initiative and Restore Lives Conference at the University of South Florida, nursing educators, researchers and clinicians who shared their commitment and common challenges related to military and veterans’ health in the U.S. and globally, came together in 2015. These articles highlight the work of nurses on issues of concern for veterans and active duty service members and their families (see conference program here).

Dianne Morrison-Beedy, PhD, RN, WHNP, FAANP, FNAP, FAAN is a Professor of Nursing, Global Health and Public Health and past Senior Associate Vice President of the University of South Florida Health, as well as Dean of the College of Nursing. Her work in the area of veterans’ and military health nationally has now taken a global perspective as she has included related issues from other countries. She brought together the papers from the Joining Forces conference in the recent issue of NURSING OUTLOOK. We asked her to elaborate on the series by answering 3 Questions!

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

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

dianne-morrison-beedy-600x400Dianne Morrison-Beedy, PhD, RN, WHNP, FAANP, FNAP, FAAN
Professor of Nursing, Global Health and Public Health, University of South Florida (USF)
Past Senior Associate Vice President of USF Health and
Dean, USF College of Nursing

 

Question 1. What was the impetus for a military and veteran focus special edition of Nursing Outlook?

To listen, click here.

The idea for the issue really was sparked several years ago, around 2012, when Joining Forces became a focus for our Nation. Joining Forces is a National initiative and it focused on education and wellness and employment for veterans. It was spearheaded by First Lady Michelle Obama and Dr. Jill Biden and it really was to support and honor American service members and their families. At that time over 600 colleges of nurses met this initiative head on, and developed curriculum, tool kits, research, webinars and veterans-focused programs.

In my role as the Senior Associate Vice President for USF Health and the Dean at the College of Nursing at the University of South Florida, I brought together leaders in those areas for what has become now a yearly Joining Forces to Restore Life conference. All these approaches were very much needed as there are over 22 million veterans of the US Armed Forces and in fact there is over a million residing in Florida, Texas and California.

So both those who have served and their family members are impacted from stressors of deployment, combat, separation, and frequent moves, as well as employment and education transitions. So it was in essence a time for nursing to do its part, and it was truly gratifying to see the overwhelming response from Nursing Academic Programs across the U.S. to the Joining Forces call.

Question 2. Why do you think this topic is so important to nursing at this time? 

To listen, click here.

Over the past several years since the Joining Forces kick-off, nursing academia has been moving these various initiatives forward. As is often the case in nursing, we are quietly making an impact on an individual, unit, or case by case basis. And I thought that editing a special edition issue highlighting just a few of the tremendous steps forward in these areas that have been led by nursing was important to both document as well as to provide an opportunity for us to talk more about these topics.

So I am very grateful for the opportunity for this interview and for serving as editor. And it was over the past few years because of my connections with Joining Forces and the military that I began to partner internationally on several veterans focused initiatives.

Committed partners can do great things together and the result was the International Joining Forces to Restore Lives conference held in 2015 in the UK.

Now it’s really what I saw there, what I experienced, what I learned, really what I felt could be summed up simply as “individuals who came together with a committed passion for making life better for active duty service members, veterans, and their families.”

We shared many of the same challenges and this conference allowed us to put our heads and our hearts together to come up with solutions, support, and strategies to find a path forward for those who have served and for those who are protecting all of us at this moment.

Question 3. What are the “take-home thoughts” you have for readers?

To listen, click here.

I think readers will be very pleased with this issue not only with the content that’s provided but with the ability to see other nursing academics and scientists who are doing work in the area and have the opportunity to connect with them.

We are a very diverse group of scholar clinicians but the common the thread among all of us is a passion and the commitment for active duty military, our veterans and their families.

So whether we’re examining pain management, trauma informed care, how service impacts family members, or reintegration of veterans once they return home, this issue brings together ideas and data and programs from global nursing leaders. The issue highlights both what we are doing and what we can do to meet the physical and the psychosocial needs of those in the military and strategies for education, clinical and scientific innovations.

It’s been a real pleasure serving as editor for this special edition, and even though we have joined forces, we still need to keep moving forward with what nursing can contribute to military and veterans’ health. And I hope this issue just highlights some of the ways that we are doing that.

 

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
Editor/Moderator

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
Editor/Moderator

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
Editor/Moderator

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
Editor/Moderator

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

FutureofNursingCampaign

 

 

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 campaignforaction.org 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!

VIRGINIA SABA SPEAKS OUT ON NURSING DOCUMENTATION AND THE ELECTRONIC HEALTH RECORD (EHR)

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
Editor/Moderator

SabaPhoto

 

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
Editor/Moderator

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.