- The PCORI Strategic Plan
- Clinical Effectiveness and Decision Science
- Dissemination and Implementation
- Evaluation and Analysis
- Healthcare Delivery and Disparities Research
- Research Infrastructure
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care: A Request for Input
Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Executive Team
- Office of the Executive Director
- Program Support and Information Management
- Staff Conflict of Interest Disclosures
Engaging patients and other healthcare stakeholders in the research process is a fast-growing trend. We are truly seeing a culture change as more clinical scientists recognize the value of incorporating patient and other stakeholder perspectives to make their research more relevant and feasible and its findings more useful. In addition, various funding organizations have begun engaging patients in reviewing research proposals and other activities. But the trend is still relatively new, and few resources are available to guide these important efforts.
“It has often felt as though my colleagues and I have been on an island as we wrestle with issues that arise,” says Kendall Bergman of Susan G. Komen®. She speaks for many about a challenge that we at PCORI find very familiar. So to build connections between groups that fund patient-engaged research—and to team up on developing the most effective approaches—we recently hosted a roundtable focused on patient engagement in the conduct of research and review of project proposals. Participants considered current engagement practices, including training of participants, how these practices are being evaluated, and how they can be strengthened. To our knowledge, this was the first gathering of public and private funders to address these topics.
Creating a New Community
The most important outcome of the roundtable is that it created a sense of community among those involved in funding patient-engaged research. Bergman says, “It was great to be with a group of incredibly dedicated and brilliant individuals thinking through similar issues around patient engagement.”
Says Al Richmond of Community Campus Partnerships for Health, “The roundtable exceeded my expectations, as it provided a global perspective on patient/consumer engagement.”
The group enthusiastically agreed on the importance of continuing to build this community and facilitate exchange of ideas and partnerships. By sharing what we know and the processes we have established, we will fill gaps, bridge silos, and collectively develop new knowledge. By the end of the roundtable, participants were looking forward to creating a listserv or other mechanism for maintaining their connections and inviting other funders of engaged research to join the community.
Building this community will not only help PCORI advance its own stakeholder engagement practices but also contribute toward one of our strategic goals: influencing clinical and healthcare research funded by others to be more patient-centered. We recognize that we can’t answer all of the important healthcare questions by ourselves, so we endeavor to encourage other funders to take a patient-centered, stakeholder-driven approach to research. Because PCORI has more staff and resources than many other funders for developing and evaluating engagement processes, sharing what we learn—and are learning from others--will help improve the overall quality, relevance, and usability of the nation’s clinical research output.
Facing Tough Issues
By facilitating communication among funders, we want to not only share promising practices currently available but also tackle tough engagement issues. Bergman says that she sometimes feels like a broker between patients and researchers, sometimes like a public relations expert, and sometimes like a therapist. She adds that the roundtable, in part, lifted that burden by putting her in touch with creative people at other organizations who are trouble-shooting similar issues.
Some of the difficult issues raised at the roundtable included ensuring the legitimacy of engagement and preventing tokenism, managing the logistics and cost of engagement, and knowing how and where to find patient and other stakeholder partners.
When organizations face a tough issue, it’s helpful to reach out to others with similar dilemmas. We need to share failures as well as successes. The roundtable participants expressed strong interest in becoming resources for each other.
We can be most effective if we all take advantage of what others have learned about engagement in research and the evaluation of those efforts. By working in concert, we can most effectively advance these fields.
One area of urgent interest is training: we want to assess the spectrum of patient, other stakeholder, and researcher needs. We would then determine what sorts of training are now available and what must yet be developed. Roundtable participants noted that some organizations have created training programs and recommended the establishment of a bank of such resources that all funders could access. Says Bray Patrick-Lake of the Clinical Trials Transformation Initiative, “We need a matrix and menus of training modules, then you can find the solutions for your community.”
Another area that would benefit from cooperation across funders is measurement of the impact of patient engagement and the value of its various components. PCORI has invested heavily in such assessment. The roundtable participants plan to form a working group focused on evaluation of engagement.
Learning about all of the engagement activities going on among the participants spawned a dialog about how to make others aware of this work. The participants called for a mechanism to share what is being learned about the engagement of patients and other stakeholders throughout the research process. They suggested forming writing groups on a variety of topics and identifying opportunities for publication.
The participants also expressed their eagerness in taking what they had learned back to their own organizations, as well as keeping up the connections born at the roundtable. Bergman says, “I returned home with a renewed commitment to my work and the possibilities of what we can accomplish together.”
February 12, 2016, 2:39 PM
Comment by PCORI,
Thank you for your comment and your interest in repurposing the blog posts. We will respond to you via email. In the future, if you’re wondering about repurposing our blogs, your best course of action is to email us at [email protected]. We will then get your request to the right parties.
February 12, 2016, 11:43 AM
Comment by Johnf974,
Do you mind if I quote a few of your posts as long as I provide credit and sources back to your weblog? My blog is in the very same niche as yours and my users would truly benefit from a lot of the information you present here. Please let me know if this alright with you. Thank you! befkeakddckc
March 24, 2015, 3:07 PM
Comment by Terry Kungel,
I am on one of the visiting committees at the Dana-Farber Cancer Institute as a patient representing the prostate cancer community. Dr. Benz, C.E.O., Dana-Farber uses a phrase with all of us that I think applies, "how can we help you, to help us?" There are many patients who would like to know how we can help you, but we need more of a conversation about what we can jointly do to help each other.
Add new Comment
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.