PCORI's Role in My Advocacy Journey

To mark our fourth anniversary, we invited representatives of our key stakeholder communities to describe the influence that PCORI has had on their work and their perspectives on clinical research. In this post, a patient advocate talks about her introduction to patient-centered outcomes research and how her work with PCORI increased her focus on patient-centeredness, shared decision making, and understanding of research. The views expressed are those of the author and not necessarily those of PCORI.

Evolving from a dutiful patient and an advocate for other patients to a partner in research and advocate for my own healthcare has been an educational and emotional journey. In this passage, PCORI has played an important role by enriching my knowledge of research, giving me an opportunity to shape clinical studies, and exemplifying how patients can find useful information to guide their own health care. By collaborating with patients, practitioners, researchers, and the public, PCORI is making changes of historical importance in clinical research priorities, funding, and conduct, all focused on patient-centeredness.

I became a patient advocate 10 years ago. I had been diagnosed with the autoimmune disease rheumatoid arthritis, and I was later also diagnosed with Crohn’s disease, fibromyalgia, and multiple sclerosis. My failing health forced me to give up my manufacturing business. At that time, I relied on my physicians to determine the best treatment plan and obediently followed their orders. But I felt that I had lost control of my life.

By becoming a patient advocate with the Arthritis Foundation, I sought an avenue to empower others as well as myself. In that work, I learned of the limited patient participation and collaboration in healthcare research. Many research studies I read did not have any references to patient participation in the formulation or conduct of the study. I became aware that most medical decisions are based on research that is not patient centered and does not include patient-identified outcomes. It was then that I started seeking an appropriate vehicle to become involved as an equal partner in healthcare research. I searched for organizations that are engaging patients and allowing them to participate in the research process.

Late in 2011, a colleague referred me to the PCORI website. I found that PCORI’s mission shared my view of patient-centered outcomes research (PCOR). Since becoming involved with PCORI in early 2012, my knowledge of research has been enriched. I see that information derived from clinical trials is a powerful tool for patients. I have also become more focused on patient-centered outcomes. I encourage patients to be equal partners in medical decision making and help them review their options.

Patient Advocacy

My participation in PCORI’s activities has had an enormous impact on my professional work as a patient advocate. I now give patient-centeredness priority in all my projects. I had relied upon professional resources, looking only at clinical outcomes, without ever questioning the scientific methods used to reach conclusions and recommendations. Now when I consider research findings, I think about whether outcomes important to patients have been addressed. I also go to publications by advocacy groups for information.

My experience with PCORI has also given me an entirely different approach regarding shared decision making in medical settings. As I talk with patients, they often say that clinicians rarely ask what outcomes the patient desires. For example, a patient may want to continue working while managing pain, but the practitioner prescribes medical leave and immobility. I want to bridge that communication gap, prioritize patient-centered outcomes, and satisfy patient needs that are currently being ignored. I have shared some of my experiences with patients, and patient advocates. Most have indicated a desire or intent to incorporate PCOR into their work.

PCORI has also changed my recommendations on how patients and patient advocates collect and share information. I now encourage patients to keep a health journal. Sometimes, extra data from the patient can have a major impact on treatment decisions. I’ve also learned new ways of keeping patients informed and encouraging participation in advocacy activities. I use grassroots groups such as Autoimmune Awareness of Northern Michigan, Facebook groups such as Squeaky Joints, and other forms of social media, such as Twitter and Instagram. These platforms can provide additional information, disseminate results to specific audiences, and serve as a sounding board on patient-selected research priorities, topics, and outcomes.

Merit Review

I have served as a PCORI merit reviewer since 2012. I’m a standing member of the panel that reviews applications for funding under PCORI’s Assessment of Prevention, Diagnosis, and Treatment Options research priority and also served as a merit reviewer for the funding announcement Treatment Options for Severe Asthma in African Americans and Hispanics/Latinos. PCORI's merit reviews encompass vast amounts of data as they evaluate each proposal against multiple criteria related to PCOR.

PCORI merit reviewers represent either the scientific community or patients, caregivers, clinicians, and other stakeholders. The respect shown to each panel member is unequaled in my past experiences with clinicians. Each reviewer is of equal importance, and each opinion is of equal value. I am excited to participate in such an innovative endeavor and am incorporating all the knowledge gleaned from my PCORI participation into advocacy and activism related to autoimmune disease.

On a personal level, through my participation I’ve significantly improved my critiquing ability, increased my peer network, gained invaluable insight into the research process, and had the satisfaction of making a meaningful contribution.

Dissemination

I was impressed that PCORI begins considering dissemination of findings when it evaluates applications for research funding. Scientists and clinicians have conferences, journals, and many other avenues of dissemination, but patient and patient advocates historically have limited access to the scientific information.

Today, many patients belong to grassroots groups and are quite savvy with social media. By including patients in the research from formulation to conclusion, patients can effectively share information quickly through already-established networks. Disseminating findings through targeted networks is economical and expedient. As a PCORI Ambassador, I’m already using my networks to communicate PCORI’s mission to my community.

Overall, I appreciate PCORI’s successes in changing the focus of clinical research and allowing patients to partner in the research process. From my participation in PCORI activities, I’ve reaped unexpected rewards, and I’m grateful for the experience. It has allowed me not only to have a voice in what research is funded but also to become a more effective advocate for patients and ultimately, myself. I expect my association with PCORI to flourish over the coming years.

Lenzini is a PCORI Ambassador, a standing member of a PCORI Merit Review Panel, and participates in a National Institute of Health trial. She is the Executive Director of the newly formed Grand Traverse Health Advocates and an Ambassador for the Arthritis Foundation and has a private advocacy practice.