Patient engagement is at the core of KPMP. Patients have been involved since the planning stages of the project, setting the inclusion of the patient voice as a priority at the very beginning of KPMP. When the project launched in 2017, the consortium convened a group of patient partners (then known as our Patient Engagement Working Group) to provide advice and patient insight to the project on an ongoing basis. Over the last several years, the group has expanded to include community clinicians, patient care partners, ethicists, along with members of the research team, and is now the Community Engagement Committee (CEC). The recently published article "Integrating Patient Priorities with Science by Community Engagement in the Kidney Precision Medicine Project" summarizes the accomplishments of the CEC, and the importance of integrating the patient voice in research design. Below, members of the CEC provide insight on the paper's importance, and what participation in KPMP means to them.
Catherine Campbell, PhD (Patient partner, Dallas, TX): "It has been an honor to participate in the Kidney Precision Medicine Project (KPMP) consortium. As a healthcare professional, most importantly, as a Chronic Kidney Disease CKD) patient, contributions have been encouraged leading to empowerment of self-care management. The KPMP consortium has provided insight for medical professionals, beyond research data, with physiological / psychological perceptions of kidney disease patients. The precision medicine project will guide the creation of a kidney atlas. Care and treatment will be individualized learned through kidney tissue samples, not currently available. The KPMP demonstrates benefits for current kidney patients and future prevention of kidney disease.
Simon Lee, PhD, MPH (Investigator, UT Southwestern):"This is a landmark accounting of stakeholder engagement in clinical kidney science. Hopefully, it will be an encouragement to other NIH funded studies going forward. As a result of vocal contributions of KPMP patient and community advocates, there were tangible results of this collaborative work. Unusual for US clinical research, KPMP purchased no-fault harm insurance to provide compensation for participants who suffer injury or financial loss from KPMP participation in the absence of medical negligence. This reflects both the ethical commitment to minimizing risks and the confidence of the KPMP community in the rigor of the research procedures clinical investigators are undertaking with research patient participants. We all appreciate NIDDK’s support for such stakeholder engagement.
Ian de Boer (Co-Director, KPMP Administrative Core): “KPMP patients are changing the way that medical research is done. This paper lays out a roadmap showing how patients can contribute to and improve all sorts of cutting-edge research.”
Keith Brown (Patient Partner, KPMP Steering Committee member, Post Falls, ID): "With input and advocacy from patient partners, KPMP has taken unique steps to mitigate potential risks of physical and financial harm to the research participants. We look forward to seeing future studies build on this new concept of "patients as partners" in scientific research."
Tyler Miller, MD (Investigator, UT Southwestern) "In a book that was poplar in US colleges in the 1960's and 70's, The Structure of Scientific Revolutions, the author, Thomas Kuhn, made the point that creative and valuable work often comes from creative people crossing fields. The PEWG fits that model. Although we have varied backgrounds we came from two distinct perspectives or fields, health care professionals and people who receive a specific type of health care. Although we were aware of each others' perspectives, we had not worked in a regular partnership or collaboration for a defined larger goal. By each group crossing their field of health care or receiving health care we as a group came up with innovative and productive approaches to clinical research that had eluded others working alone."
Glenda Roberts (Patient Partner, KPMP Director of Communications, University of Washington) "As patient partner, we especially appreciate the level of commitment to including the patients’ voice in all aspects of the KPMP research. Patient engagement throughout the KPMP consortia continues to contribute to the relevance; efficacy; efficiency; and anticipated outcomes that aim to improve the lives of people living with kidney diseases. The extent of patient involvement will help to increase confidence and build greater trust within the larger community, so that the resultant novel treatments and therapies will be broadly adopted in real-world settings. "
Ashveena Dighe, MS, MPH (KPMP director of Program Operations, University of Washington) added "patients are at the core of KPMP activities. Everything we do is for future benefit, and inspired by our patients. I hope that KPMP's commitment to patient inclusion in research design will model the way for future studies."
Jonathan Himmelfarb, MD (Principal Investigator, University of Washington): “Having patients at the center of KPMP from Day 1 (actually even earlier, when KPMP was still in the inception stage) has kept us all grounded and focused on what really matters. It’s all about making a difference in the lives of people living with kidney diseases.”
Katherine Tuttle, MD (Co-chair - KPMP Community Engagement Committee, Providence Healthcare) "Our patient partners continue to teach and remind the study team about “the why” for our research. They have contributed beyond what we could have possibly imagined. As a result, the KPMP is squarely focused on using cutting-edge science as a tool to solve problems that matter most to patients."
Richard Knight (Co-chair - KPMP Community Engagement Committee, American Association of Kidney Patients) "The article, Integrating Patient Priorities, is a milestone achievement. I refer to it as a milestone achievement because it provides a clear roadmap of how patients can play a meaningful role in high-level research projects. Additionally, the article highlights the possibilities of what can be accomplished when leadership is truly vested in the concept of patient engagement. I strongly recommend this article as required reading for the research community in all disciplines."