PCORI is Opportunity: Reflections From Our Workshop on Transforming Patient-Centered Research

November 2, 2012 by Sue Sheridan, MBA, MIM

During a side conversation at our recent workshop on building a patient-centered research community, one patient advocate summed up her take on what the Patient-Centered Outcomes Research Institute represents. “PCORI is opportunity,” she said. She was describing her hopes for a change in culture and practice that repositions patients, caregivers and the broader healthcare community as valuable partners in the research process, and bases research priorities on outcomes important to patients.

As we were speaking with potential attendees in planning the workshop, a researcher picked up on the same theme. “Now, as a researcher, I realize the most important players need to be on the team: patients and their families,” he said. “I dream of a day when clinicians, researchers, policymakers, funders and patients and families all look back on today as the ‘dark ages’ of research, when we naively neglected to include the most important voice in efforts to improve healthcare delivery, patient outcomes, and healthcare policy.”

Different participants, from different worlds, with different perspectives. But a shared vision of what we at PCORI see as the theme that ties our work together: “research done differently.”

The workshop was not the kind of gathering any of us could recall being held previously, and we marveled at the mix of participants. There were well-known “professional patients” as well as passionate individuals new to patient-centered research, like a young man with epilepsy who ended the weekend deciding he wanted to work for us. There were caregivers – including a man from a rural area caring for his wife with breast cancer and others caring for parents with dementia. Other stakeholders came from research universities and hospitals, professionals dedicated to studying and treating rare diseases, and leaders in community-based participatory research in vulnerable urban populations. Some 150 patients, researchers and other members of the healthcare community gathered in Washington October 26-28 for our workshop, “Transforming Patient-Centered Research: Building Partnerships and Promising Models.” They came to build community, generate the “what ifs,” reimagine patient-centered research, and help us build a culture of patient-centeredness, foundational principles and a sustainable architecture for patient engagement and rigorous research.

The workshop began with real-world examples of patient/researcher partnerships that showed how research can, indeed, be done differently, including:

  • A small group of mothers of children with kernicterus who partnered with researchers, and then healthcare
    professionals and systems around the country, to improve outcomes for newborns.
  • Two brothers who created a model for unifying patients with similar conditions “to share real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions.”
  • A rancher and his wife, an educator, who were sought out by a university to unite rural communities and researchers to study health issues important to that community, including colon cancer and hypertension.
  • A minority community experiencing disparate mortality outcomes that sought out a major research center to improve outcomes in heart disease, stroke and cancer.

Workshop participants rotated among five engagement sessions, each focused on a key area where PCORI is seeking ongoing stakeholder input:

  • Identifying and Selecting Research Questions
  • Reviewing Research Proposals for Funding
  • Matching Patients and Stakeholders with Researchers
  • Disseminating Research to the Community
  • Evaluating PCORI’s Patient and Stakeholder Engagement Programs

Each session generated genuine, lively, and meaningful discussion both on site and through online channels – more than 450 people followed our live webcast over the two days and social media channels were filled with comments (there were more than 1,000 Twitter posts alone). You can see the video archive of the workshop plenary sessions here.

We heard a range of suggestions that we will explore further, including how to best capture research ideas from patients and other stakeholders, the concept of “micro-grants” for building partnerships between patients and researchers, enhanced patient participation in funded proposals, tools for matching researchers with patient partners, and even the creation of a PCORI Ambassador initiative. And we were repeatedly challenged to “listen,” be fully transparent, responsive and inclusive.

Speaker stands at a podium on a stage in front of the audience

We’ll compile the conversations from each session into a detailed report that we’ll release in about a month. We’ll also post pictures, videos and other materials that paint a detailed picture of the workshop and our next steps. You can view the Breakout Session and Discussion Murals here. Be sure to watch our website to see these reports and sign up for our email alerts to stay current on everything we do. For information on how to work with us, send me a note at getinvolved@pcori.org.

The challenge and opportunity of shifting the research culture to one that is truly patient-centered, that designs research with and welcomes patients, caregivers and their organizations as partners, belongs to all of us.

We look forward to hosting future workshops that continue to connect patients, clinicians, researchers, industry and all healthcare community members in new ways. While each group, and each individual, brings a different perspective, we all hope to improve research with the same goal: to improve patient outcomes.

I want to thank our workshop planning committee, which helped plan the event. This group of dedicated patients, patient advocacy organizations, and members of the PCORI Board and Methodology Committee was instrumental in ensuring that our event was focused, productive and above all else patient-centered. Information about all of our working group members is provided in the Workshop Leaders document  posted on the event page.

This workshop was just the beginning. I am confident that, as a community, we can address this challenge – and seize this singular “opportunity.”

Sue Sheridan is PCORI’s Director of Patient Engagement



10 Responses to“PCORI is Opportunity: Reflections From Our Workshop on Transforming Patient-Centered Research”

  1. Marty Hatlie

    What struck me as particularly interesting and significant were the new voices — concerned people with experiences and ideas to share who weren’t spokespeople for established organizations. Their participation as part of the mix with well-known advocates, researchers and experts was very energizing for me as a facilitator.

    PCORI’s outreach, application process and selection process produced this interesting community, and so credit to you, Sue, and the entire PCORI staff for that thoroughness.

    Reply
  2. Robin

    I applaud PCORI for taking the initiative to gather a diverse body of 150+ participants together to generate open dialogue between those whose perspectives differ. Truly I didn’t know what to expect, but I was adamant that I would attend the workshop with an open mind. The workshop provided an opportunity to foster collaboration while embarking on new concepts in terms of engaging stakeholders into the arena of patient centered outcomes research and its potential.

    Prior to the workshop, I was unfamiliar with “Patients Like Me” and other advocate organizations, but welcomed the opportunity to expand my knowledge base. I am elated to have been invited to participate in the collaboration of PCORI’s grassroots initiative.  In order to effect change I believe you must start somewhere. It is my belief that the commonality in all participants is that we share an overall passion to achieve a format that will result in best practices and outcomes for patients and families through patient centered outcomes research. Thank you PCORI and staff for your visionary effort. In closing, a quote from Harry Belafonte, “radical thoughts lead to change.”

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  3. Rahma Osman

    I’m sorry I was unable to join the workshop in person but I followed along on twitter!

    I am writing to make sure PCORI stakeholders are aware of the upcoming 2nd National Community Partner Forum on Community-Engaged Health Disparities Research, December 5-7, 2012 in Washington DC and funded in part by the National Institutes of Health.* The application deadline was Oct 12 but we are continuing to consider applications on a space available basis. I’ve shared some background information about the forum below. The call for applications can be downloaded from the forum webpage at http://bit.ly/UyTkHT

    Community engagement in research is central to understanding and addressing racial, ethnic and socioeconomic disparities in health. Research funding agencies are supporting faculty members and institutions to engage communities as partners in conducting research. As more community organizations enter into research partnerships with institutions­ as well as initiate and conduct research, it is clear that we need our own networks for professional development, mentoring and advocacy in order to advance the social change through knowledge and power sharing that must happen if we are to achieve health equity in this country.

    At the inaugural National Community Partner Forum in December 2011 in Boston, an agenda for change emerged: For research to have any hope of moving the needle on health disparities, communities of color and low-income communities need to have (1) power in decisions made about research (2) the capacity and infrastructure to engage as equal research partners with institutions and conduct their own research and (3) significant roles in building the capacity of academic institutions to engage and partner with communities. As community leaders who are passionate about health equity and social justice, participants quickly came together around the need for research equity and justice – through the co-production of knowledge and building democracy in the shared governance of their partnerships. Inaugural forum participants – 77% people of color and 80% involved in federally funded research – established a leadership structure, formed workgroups for peer learning and resource development and pledged to gather again a year later in Washington DC.

    The 2nd National Community Partner Forum seeks to advance community-engaged research as a tool for eliminating health disparities by:

    * Deepening the knowledge and skills needed by community partners to successfully conduct community-engaged research, negotiate community-academic research partnerships and serve in national leadership roles;
    * Disseminating innovative work of community partners that others can learn from and build on;
    * Engaging in constructive dialogue between community partners and key stakeholders in academic, government and philanthropic sectors to foster mutual understanding and supportive action; and
    * Growing and deepening a national network of community partners that facilitates professional development and has a significant voice in decisions about research practice and policy

    The forum agenda is designed to provide time and space for community partners to learn and strategize together as peers before their academic partners and other key stakeholders join the conversation. On Wednesday December 5th, afternoon skill-building workshops will cover such topics as the basics of community-based participatory research, addressing challenges in partner-based research, applying for and managing research grants, preparing to serve on federal research advisory committees and grant review panels, and developing community IRBs and community research review boards. On Thursday December 6th, workgroups will report on their progress and engage new community members in determining their future plans. Small group sessions will tap into the knowledge in the room by drawing out successes, failures, lessons learned and promising practices in community-engaged research. That evening, academic partners, policy makers and funders will join the forum for a reception and poster session. On Friday December 7th, community partners will report on their deliberations and engage academic partners, policy makers and funders in a dialogue around the actions that are needed. The forum will conclude that day at 12 pm.

    I’d be happy to answer any questions you may have about the forum and can be reached at programs@ccph.info

    Thanks!

    Rahma Osman
    Community-Campus Partnerships for Health
    http://ccph.info

    *Funding for the forum is made possible (in part) by 1R13MD007569-01 from the National Institute on Minority Health and Health Disparities, the Eunice Kennedy Shriver National Institute of Child Health & Human Development, and the National Institute of Environmental Health Sciences awarded to Community-Campus Partnerships for Health and the Center for Community Health Education Research and Service. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

    Reply
  4. Matt Cheung

    I returned from the workshop much better educated on PCORI and how patient engagement is paramount to it’s success. At a Medicare health fair yesterday, I saw how, using music therapy, stroke patients regain their ability to walk after everything else failed. I encouraged her to submit research questions on the PCORI website. Although she has never heard about PCORI, she was so excited about the opportunity she wanted a copy of what I have, besides going onto the website right away.

    Reply
  5. Patty Skolnik

    Refreshing, Wow, Passionate this is what we have needed for so long and I for one appreciate the thought and process PCORI staff went through for making this workshop come to life. We will see better outcomes with these new partnerships.
    Thank you

    Reply
  6. Taylor Walsh

    Sorry I missed it. The whole PCORI enterprise has an eerie resemblance to those first days in the mid-1990′s when people started creating their own web sites. User-generated-content (UGC) in those days; patient-generated-health-research (which is very much content; PGHR ? ) in this era. Great work to bring in the online patient communities.

    Reply
  7. Sally Okun

    These are transformative times and harnessing the power of so much possibility may well be our greatest challenge. Yet, I’m reminded of a favorite quote from Margaret Mead…”Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

    …and another inspired by our work at PatientsLikeMe…”To learn / listen well / to the impressions voiced by / patients first.” – okun, 2010

    Reply
  8. MICHAEL A ROSADO

    I wanted, as a patient , to fill out the application, as a reviewer for PCORIS’s ,in order to become a STAKEHOLDER-REVIEWER,but the application can’t be open,what other option to submit my application are available.

    Reply
  9. Lisa Morrise

    I appreciate Sue’s excellent summary of the PCORI workshop. It was a singular experience in moving the PCORI ideal of working with patients and families forward. The workshop was also a wonderful example of how engaged and committed patients can assist in and provide insight toward moving a project forward. I’m excited to see the “next steps” come to fruition!

    Reply
  10. Lorraine Smith

    Let us not forget those critical to patient centered outcomes. Their commitment to care, their ability for critical thinking and ability to be strong advocates for patients is critical to any and all good outcomes. I’m not seeing that in the hospital arena. We need to take a long hard look at who is at the bedside , otherwise, all else we do is lip service.

    Reply

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