PCORI: Changing the Research Landscape
As rehabilitation nurses, we recognize that patients, families, and caregivers are at the center of the team. Patient-centered care is not just a buzz word in rehabilitation, but rather a standard of our practice. However, this has not always been the case in nursing research. Nursing has been described as both an art and a science. To continue to promote nursing science and practice, it is up to us as nurse clinicians, scientists, and scholars to advance nursing in the scientific realms in addition to the translation of evidence into practice. To generate new knowledge often means securing funding to develop and formulate meaningful questions for which answers are sought. Common venues for funding of research and grants may include nursing entities such as the Rehabilitation Nursing Foundation (RNF) or other organizations such as the National Institute of Nursing Research, the National Institute on Disability, Independent Living and Rehabilitation Research, or the National Institutes of Health. Many of you may be familiar with these groups as possible funding sources; however, there are other sources that exist. In fact, one organization in particular is changing the way research in healthcare is being conducted. This is PCORI.
"P" What?
PCORI, or Patient-Centered Outcomes Research Institute, was authorized in 2010 by Congress as an independent, not-for-profit, nongovernmental organization as part of the Patient Protection and Affordable Care Act. Its key objective is to determine which of the many healthcare options available to patients (and those who care for them) work best in particular circumstances. This is achieved through PCORI's mission, which is to "help people make informed healthcare decisions and improve healthcare delivery and outcomes by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community" (PCORI, n.d.).
PCORI values research that has attributes such as the usefulness of research, transparency, patient-centeredness, and inclusiveness through the use of evidence. PCORI has five priority funding areas, which include the following:
[black small square] Assessment of Prevention, Diagnosis, and Treatment Options
[black small square] Improving Healthcare Systems
[black small square] Communication and Dissemination Research
[black small square] Addressing Disparities
[black small square] Accelerating Patient-Centered Outcomes Research and Methodological Research
PCORI is unique in that the patient-centeredness and patient engagement factors are paramount for each research application submitted. This means patients are involved from helping to formulate the specific research question(s), as well as help with both the analysis and dissemination of results. Patients, patient representatives, and caregivers alike must be instrumental through each phase of the research process. Patient partners may include the patient, family, caregiver, and others. The research application should consider questions such as "What outcomes are most important and meaningful to the patient or patient partners?" The research plan should demonstrate active engagement among scientists, clinicians, stakeholders, patients, and patient partners (PCORI, n.d.).
Rehabilitation nurse clinicians and researchers along with other healthcare providers must change the way they engage patients and stakeholders in research. Asking for patients' input before initiating the research proposal can lead to meaningful questions and potentially significant findings. For instance, a particular rating on a depression scale may not be meaningful to patients with depression, yet how many days from work that are lost due to depression can be very important and meaningful to these patients. Likewise, for individuals with stroke who cannot access outpatient therapy post discharge, can telemedicine therapy-led exercises yield comparable or better outcome versus in person therapy services?
Medical terminology or medical jargon can be confusing to patients and stakeholders. According to Tai-Seale, Sullivan, Cheney, Thomas, and Frosch (2016), including patients from the inception of the research process can provide a useful perspective not only for the research question(s) asked, but also of the terminology, instruments, and strategies used. The authors found, during the PCORI application process of engaging patients, that the term "mental illness" denoted a negative image in the minds of patients, whereas emotional wellness was the term viewed more positively and preferred by patients (Tai-Seale et al., 2016).
Keys to Success
Research applications that are funded by PCORI typically have key elements such as a clearly defined target population with well-defined comparators (as well as a strong rationale for the comparators), take place in a real world setting, and have meaningful outcomes to the patient. Having preliminary evidence of the potential for successful recruitment as well as identifying potential barriers (and a plan to overcome them) is important for each research application. Demonstrating the likelihood of the research to improve current clinical practice along with actively engaging patients and stakeholders throughout the research process is imperative.
Some researchers have stated that it is "too hard" to get PCORI funding or it is too much "effort" to get patients involved in the research process. Traditionally, researchers often have a different perspective or framework in how research should be conducted versus that of the lay community. However, times are changing at a rapid pace in both healthcare and research. PCORI prides itself on doing research differently. Engaging patients and including the patient perspective in healthcare and research are here to stay. Concepts of open communication, collaboration, patient-centeredness, and active engagement are now fundamental, critical components in innovative research applications submitted to PCORI.
PCORI and RNF
The premise of PCORI ties nicely into the Rehabilitation Nurses Foundation (RNF) Research Agenda. This agenda identifies seven key areas in which each touch upon advancing rehabilitation nursing care, practice, and quality through evidence-based, innovative, and patient-centered research (RNF, 2014). Only through a collaborative and harmonious synergy of working with patients, patient representatives, clinicians, and other vested stakeholders can we hope to advance the art and science of rehabilitation nursing, provide better care and answer those questions most important to patients.
A Doctoral Student's Reflection on the PCORI Conference: Changing the Research Landscape
My journey with research is just beginning, and there are so many new acronyms in my novice PhD student world. For example, the National Institutes of Health and PCORI have been mentioned many times, and I find myself contemplating how PCORI will affect my future.
As a Jonas Scholar, I receive e-mail blasts from American Association of Colleges of Nursing and the opportunities available like webinars, scholarships, and updates. I received one at the beginning of September on the PCORI conference in November and the opportunity to apply for a scholarship to be trained on PCORI grant writing. This approach to research intrigued me such that I applied for (and received) a scholarship offered by PCORI to attend their conference.
A common theme across sessions, panel presentations, and networking receptions was an emphasis on the traditional lack of involvement of the patients and families in research. Including patients in research should not be a novel idea-it's logical! Statements like "patients first" or "patient and family-centered care" are spoken often, but we are far from including these constituents in the design of research affecting patient care. We can do a better job of keeping them informed about how research impacts care. The PCORI movement has sponsored many programs of research in which patients are key stakeholders. Having patients as co-principal investigators and involved in every moment from inception to dissemination is recommended by PCORI.
Meeting patients at the conference and how they are involved in PCORI was powerful. The PCORI movement is important to aid investigators in changing existing research strategies. The voice of the patient is essential in understanding the true lived experience. One of the presenters, a mother of a 16-year-old with Phelan-McDermid Syndrome, spoke about the lack of time or interest in the lay person to read medical journals. When she visits the doctor's office with her daughter, the journals in the waiting room are not healthcare journals reporting patient outcomes and associated studies. She highlighted the need to publicize research findings to patients and families in translatable terms free of jargon.
Research has been historically driven by the interests of the investigator and influenced by funders. Although there is a place for investigator-driven studies, how can nursing and I as a nursing PhD student focus research using the patient voice? I challenge fellow nurses and students (graduate and undergraduate) to go to the PCORI website, learn about the interests of the PCORI network, and consider becoming a PCORI ambassador. I felt honored to attend as a trainee and left the conference with a renewed energy and passion for better understanding the patient. It was a great opportunity to understand how important it is to include patients early on in research. I am hopeful that, in my nursing career, there will be a drastic shift to more inclusive patient-centered research.
PCORI Resources
To learn more about PCORI, go to http://www.pcori.org. For information on how to become more involved, please consider the following:
[black small square] Subscribe to the PCORI newsletter.
[black small square] Suggest a PCORI question.
[black small square] Become a Merit Reviewer.
[black small square] Participate in PCORI events and activities.
[black small square] Attend the annual PCORI conference.
[black small square] Attend a PCORI teleconference/webinar.
[black small square] Attend a free, in person meeting offered by PCORI.
[black small square] Join an advisory panel.
[black small square] Become a PCORI ambassador.
Terrie Black, DNP, MBA, CRRN, FAHA, FAAN
Clinical Assistant Professor University of Massachusetts-Amherst Amherst, MA Dr. Black is also involved with PCORI as a Merit Reviewer, and is an Ambassador and Member of the PCORI Advisory Panel.
Cidalia Vital, MS, RN, CNL, CPAN
PhD Student University of Massachusetts-Amherst Amherst, MA
References