Leadership Interviews – “3 Questions” – Debra Barksdale on PCORI
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Debra Barksdale, Board Member of the Patient Centered Outcomes Research Institute (PCORI), spoke at the Council for the Advancement of Nursing Science (CANS) Conference, October 2011. Debra_Barksdale_CANS_presentation_10-12-11(1)
Debra J. Barksdale, PhD, FNP-BC, ANP-BC, CNE, FAANP
Associate Professor, University of North Carolina-Chapel Hill
Board of Governors, PCORI (Patient Centered Outcomes Research Institute)
Question 1. What is PCORI and how has it evolved to date?
PCORI was established by Congress through the 2010 Patient Protection and Affordable Care Act (PPACA). So, by law it is an independent, non-profit organization. The Patient-Centered Outcomes Research Institute (PCORI) was created to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed health decisions.
PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports options. The law clearly outlines five core duties or responsibilities of PCORI. These are:
- To establish national research priorities ;
- To establish and carry out a research project agenda;
- To develop and update methodological standards – the scientific standards for patient centered outcomes research (PCOR) and comparative effectiveness research (CER);
- To provide a peer-review process for primary research; and last but not least
- To disseminate research findings.
The evolution of PCORI is very interesting because in one year, PCORI has created a national research institute basically out of nothing except very dedicated people and some money. The Board was established bylaws and the board has created standing committees. Right now we have four standing committees. By the date of our anniversary, which was September 23, PCORI held six public Board meetings in five different cities. This demonstrates our intention to reach out to communities nationally. We have held patient or stakeholder events in conjunction with every Board meeting since March.
We have provided two opportunities for public input – on the working definition of PCOR (Patient Centered Outcomes Research) and the initial topics for our pilot projects – which go beyond our statutory requirements and show that we are committed to conducting our work in an open and transparent manner that ensures credibility, and access. We have issued three RFPs (Requests for Proposals) and our first funding application is for the PCORI Pilot Projects. Those grants will be due on December 1st.
The Pilot Projects will assist PCORI with ongoing development and enhancement of our national research priorities for patient-centered outcomes research. They will also support the collection of preliminary data that can be used to advance the field of patient-centered outcomes research (PCOR). These Pilot Projects will also support the identification of methodologies that can be used to advance patient-centered outcomes research as well as identify gaps where methodological research needs further development.
The Methodology Committee, which was also created as part of PCORI, was instituted in January 2011. And they have made great progress in the just seven months they have existed. They inform the Board regarding the methodology and methodological standards. They have outlined a clear process for developing our first Methodology Report by May 2012.
Question 2. What is your role and how do you see that connection with opportunities for nurse researchers, educators, administrators and clinicians in health care?
The statutes were very clear about the composition of the Board of Governors. Those statutes mandated that there had to be at least one [nurse] member of the PCORI Board of Governors. I feel very fortunate and honored to be that nurse selected to serve on PCORI. I was endorsed by over 30 nursing organizations as well as my university, and my local, national and state representatives.
As the only nurse on the PCORI Board of Governors, I think I bring a unique perspective in addressing the needs regarding health and health care in our country. I draw from my knowledge as a researcher, as a primary care nurse practitioner (I’m a family nurse practitioner), and as an educator, so I draw from that knowledge in representing our nurses and our patients on the PCORI institute. I also consider myself an advocate for the disadvantaged, for the underserved and for the underrepresented regarding issues of health and also research.
As the most frequent point of care, because there are so many of us in the country, nurses will be able to use PCORI’s research which will allow clinicians to deliver the best quality care tailored to individual needs. As a result PCORI’s research will affect how we teach nursing, how we deliver patient care at the bedside and elsewhere, and also how we are able to function and continue to function or more effectively function in our role as advocates for our patients and also for our profession.
There’s a tremendous amount of opportunities for nurses to be involved in the work of PCORI. One of the first opportunities is in terms of giving input. PCORI does host public meetings as we move around the country. I am really honored when I see nurses in the audience – nurses who are brave enough to get up to the podium and to address nursing issues with the Board of Governors.
There are also opportunities for nurses to participate through our webinars. All of our public meetings are broadcast via webinars. Also there are opportunities for people to dial in. Our agendas are posted well in advance usually with the PowerPoint slides. So, issues that are really important to nursing will be posted ahead of time and you could dial in or call in when you wanted to listen to that discussion.
Also, in terms of input, we have and will continue to seek input on the decisions that we make. There will be an opportunity very soon for nurses to provide input on the national priorities that we will be setting, and they can do that through our website – writing in, or, any mechanism just to make sure that voice of nursing is heard.
Another opportunity for nurses is employment. PCORI plans to have a staff of about 40 people which does include some scientists and other types of representatives. So, I would encourage people to check out the website – www.pcori.org to look at those employment opportunities.
There is also opportunity for nurses to apply for PCORI funding and PCORI grants. I mentioned earlier about the pilot projects, but there will be other funding opportunities. And nurses are in prime positions to apply for these grants because “patient centeredness” is what we are all about. And when I say “patient” I mean it in the broader sense of people – people and their health needs.
Another opportunity for nurses is to participate as reviewers of those grants. PCORI is not just seeking the same traditional types of reviewers – all academic researchers. PCORI is extending its research reviewers so that people who are not [traditional] reviewers – in fact community people, [even] patients can apply to be reviewers for PCORI grants.
So, those are just some of the potential opportunities for nurses to be involved with PCORI. Let me know, let me hear what your needs and concerns are and I will try my best to make sure that those needs are heard by the PCORI Board and are represented in the work that we do.
Question 3. What should nurses know about the plans and potential outcomes for the future PCORI resources?
What nurses should know about the plans and potential outcomes for the future PCORI resources is that PCORI is committed to patient and stakeholder engagement throughout our work and has provided several channels to receive input and will continue to provide those channels. One of my roles on the Board is to serve on the Communication, Outreach and Engagement Committee. So a lot of our work is around: How do we engage our patients? How do we engage our stakeholders, be they nurses or other types of clinicians or policy makers? So we’ll continue to provide those opportunities.
I hope that the nursing community continues to take the opportunity to provide PCORI with feedback on its work to date and to provide constructive input on PCORI’s national research priorities and research agenda. Individuals and organizations can provide input at PCORI Board meetings, or online, or you could write letters, to www.pcori.org.
So I think the major point I would like to make here is that nurses should expect that the work of PCORI will impact their work at whatever position or level that they are. And because of this I am hoping that nurses will be more involved in the development of those resources in providing input and commentary on those resources so that it’s not all about some other discipline setting the standards that nursing will have to apply in its research, in how we teach or what we teach, or how we function as practitioners in this health care arena.
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