Integrating Patient Input into Kidney Disease Research
About Us
- About PCORI
- The PCORI Strategic Plan
- Governance
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
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Provide Input
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Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- 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)
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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)
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Past Opportunities to Provide Input
- Our Staff
In 1969, six patients on dialysis at Kings County Hospital in Brooklyn formed a group to elevate kidney disease awareness, call for better educational resources, and create a community for patients living with chronic kidney disease. They met twice a week in the hospital ward—while hooked up to primitive dialysis machines for 12 to 18 hours at a time—and brainstormed how to advance the goal of dialysis coverage for every American who suffered from kidney failure. Those six patients were the founders of the organization that became the American Association of Kidney Patients (AAKP).
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Three years later, in 1972, one of them dialyzed in front of the US House Ways and Means Committee, helping shape the public argument that dialysis was a life-saving treatment. That display of courage led to passage of legislation that created the End Stage Renal Disease program that provides Medicare funding for dialysis and kidney transplants. President Richard Nixon signed the bill in 1973, based on the recommendation of his Director of the Office of Management and Budget, Caspar Weinberger. Weinberger, later Nixon’s Health, Education and Welfare Secretary and Ronald Reagan’s Defense Secretary, had met with these brave kidney patients and was impressed by their advocacy that dialysis was more than a treatment—it allowed them to keep working and was a bridge to transplantation. Weinberger lived on dialysis for the last four years of his retirement while maintaining an active voice in national affairs.
Best Practices for Engaging Patients
From the American Association of Kidney Patients
1. Efforts to engage patients should be viewed as an extension of a sound strategy to support the organizational mission, not a feel-good exercise. Patients want to be engaged in meaningful work, not in a tactical exercise that doesn’t contribute to the mission.
2. Bring patients into the process early and invite them to offer perspectives beyond the narrow focus of what you are trying to achieve. Understanding patient perspectives in light of their broader background and experiences as both professionals and patients is critical.
3. Be direct in expectations and desired outcomes, and be respectful of patients’ time. Many organizations sometimes forget that being a patient is only one aspect of an individual’s lives; most patients also have professional interests, families, and hobbies that they invest time in.
4. Be open to candor, criticism, and compliments, and encourage that dialogue throughout the engagement process. Most importantly, remember the humanity of the person you listen to and speak with—save for a chronic condition or rare disease—they are the same as you.
As kidney transplant recipients ourselves, we are proud to now lead AAKP, the oldest and largest fully independent, patient-led kidney advocacy and education organization in America. And we are proud partners with PCORI on multiple projects that advance our respective missions to get patients and those who care for them important information they need to make better-informed healthcare decisions.
Patients Should Pave Their Own Pathways to Care
AAKP has always respected the dignity, intelligence, and capacity of kidney patients to act as smart consumers and decision makers of our own health care. We fully reject the idea that kidney patients need to be protected from care choices or that others in the healthcare ecosystem should make decisions on our behalf—either as a disease group or as individuals. That’s why AAKP is so bullish on patient independence and empowerment.
But to get to the point of being fully knowledgeable decision makers, patients, and their families need the best, most current comparative information on potential treatment options. Only then are they truly empowered to work in partnership with their doctors to determine the best treatments that align with their true aspirations—be it to continue to work in their trade or profession, own a home, start a family, travel, or spend time with their loved ones or grandchildren.
If this sounds familiar to PCORI’s audience, that’s not a coincidence. AAKP patient members have consistently volunteered to serve on research teams for almost all of the kidney disease research projects PCORI has funded since its inception. Because PCORI has worked hard to reach out to patient stakeholder communities and is continually improving its engagement techniques throughout the research process—not just having them sit on a panel or check an engagement box on a research application—the end result is research that is more relevant to patients, more useful to patients, and more beneficial when taken up in practice. And, also like PCORI, our focus on research doesn’t stop once a project generates results—it continues until we’re assured those results are disseminated into the hands of patients who can use them. Our partnership is both natural and reciprocal.
We’re also excited to announce that the 44th AAKP National Patient Meeting will feature a patient-centered outcomes research (PCOR) track for the first time thanks to a Eugene Washington PCORI Engagement Award for Conference Support. The PCOR track will arm patients with specific tools to seek opportunities for involvement at all levels of research, including design, implementation, and participation.
Other AAKP Initiatives
In addition to our work with PCORI, AAKP’s efforts to engage patients more fully in the national research agenda were formalized in 2015 through the launch of our Center for Patient Research and Education. Through this center, we encourage our patient members and their families to become actively involved in the fantastic array of private-sector clinical trials, Federal agency Technical Evaluation Panels and advisory roles, and, of course, the tremendous number of PCORI-funded research projects across the country. We invite patients, advocates, and anyone else interested in kidney disease to visit our website to learn more, become a member, and join our Action Center to get involved in advancing policy.
At AAKP, all of our educational programming, all of our advocacy, and all of our public statements are based on peer-reviewed research. We believe the patient should be as well informed as a doctor, insurance broker, or anyone else trying to make wise healthcare decisions. So, for AAKP, PCORI is a gold mine of practical research and data. We are convinced that PCORI-funded research provides evidence-based information that will help patients align the best treatments available to match their innate human aspiration to achieve and to live, and we look forward to continuing to work together in the future.
The views expressed here are those of the authors and not necessarily those of PCORI.
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