NKF releases results from patient-led survey on kidney disease research priorities

By ASN Staff

Yesterday, September 28, 2017, the National Kidney Foundation (NKF) published findings from a “year-long outreach and engagement with patients and caregivers to identify patient-led kidney disease research priorities”. The findings “include the research topics that matter most to patients and family members affected by kidney disease; barriers that prevent patients from being active participants in kidney disease research or part of the research team; and what potential solutions may exist”.

“The findings are as follows:

Top three kidney disease research priorities

  1. How to engage patients with kidney disease in research including different communities/populations of patients
  2. Health literacy and communication barriers, patient education best practices (including population/demographic-specific)
  3. Patient self-management/patient activation – how do we best educate and partner with patients to understand and self-manage kidney disease

“Patients also expressed interest in research that would explore the biology of kidney disease and preventing and/or delaying disease progression

Top three barriers preventing patients from being active participants in kidney disease research or part of the research team

  1. Mistrust of medical research, especially in underserved communities and with vulnerable populations
  2. Research is not accessible to patients—distance to meetings, timing of meetings (during business hours), lack of time to participate in research, lack of technology/internet access
  3. Patients are overwhelmed—have bigger problems or concerns to deal with other than participating in research such as financial, health, mental health issues and family issues
     

Top three solutions to removing these barriers

  1. Develop diverse research teams and research champions—put primary care physicians, receptionists, patient care technicians and nurses on the teams; train them about research processes as they work with patients the most and can help engage patients in research projects; create patient research champions; and create a culture of research support
  2. Partner with community stakeholders (churches, community organizations) on research and have them help with patient recruitment on research teams; teams must be diverse and reflect the community; partnerships need to be long-term; offer research opportunities where patients are (including rural areas); build relationships with communities
  3. Have large groups of patients involved on research teams to accommodate those who may need to take a break from the project”

"As part of NKF's commitment to the Stakeholders' Conference the foundation will fund a 2018 Kidney Disease Patient Centered Research Grant. The 2018 Research Program's Call for Proposals will include at least on of the kidney disease priorities identified by patients and stakeholders at the Conference. Eligibility requirements and submission instructions are available at www.kidney.org/researchgrant.

A fact sheet for researchers provides information on how to involve patients on research teams; and a patient fact sheet helps patients and caregivers learn how to become involved. There are also opportunities facilitated by NKF to connect patients and researchers through NKF’s new clinical trials microsite, www.kidney.org/clinicaltrials. The new microsite can help patients find matching clinical trials in their local area within 60 seconds just by answering a series of questions about their condition.  Patients will also find real life stories from clinical trial participants and resources addressing common questions.

The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award”.

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Yesterday, September 28, 2017, the National Kidney Foundation (NKF) published findings from a “year-long outreach and engagement with patients and caregivers to identify patient-led kidney disease research priorities”. The findings “include the research topics that matter most to patients and family members affected by kidney disease; barriers that prevent patients from being active participants in kidney disease research or part of the research team; and what potential solutions may exist”.

“The findings are as follows:

Top three kidney disease research priorities

  1. How to engage patients with kidney disease in research including different communities/populations of patients
  2. Health literacy and communication barriers, patient education best practices (including population/demographic-specific)
  3. Patient self-management/patient activation – how do we best educate and partner with patients to understand and self-manage kidney disease

“Patients also expressed interest in research that would explore the biology of kidney disease and preventing and/or delaying disease progression

Top three barriers preventing patients from being active participants in kidney disease research or part of the research team

  1. Mistrust of medical research, especially in underserved communities and with vulnerable populations
  2. Research is not accessible to patients—distance to meetings, timing of meetings (during business hours), lack of time to participate in research, lack of technology/internet access
  3. Patients are overwhelmed—have bigger problems or concerns to deal with other than participating in research such as financial, health, mental health issues and family issues
     

Top three solutions to removing these barriers

  1. Develop diverse research teams and research champions—put primary care physicians, receptionists, patient care technicians and nurses on the teams; train them about research processes as they work with patients the most and can help engage patients in research projects; create patient research champions; and create a culture of research support
  2. Partner with community stakeholders (churches, community organizations) on research and have them help with patient recruitment on research teams; teams must be diverse and reflect the community; partnerships need to be long-term; offer research opportunities where patients are (including rural areas); build relationships with communities
  3. Have large groups of patients involved on research teams to accommodate those who may need to take a break from the project”

"As part of NKF's commitment to the Stakeholders' Conference the foundation will fund a 2018 Kidney Disease Patient Centered Research Grant. The 2018 Research Program's Call for Proposals will include at least on of the kidney disease priorities identified by patients and stakeholders at the Conference. Eligibility requirements and submission instructions are available at www.kidney.org/researchgrant.

A fact sheet for researchers provides information on how to involve patients on research teams; and a patient fact sheet helps patients and caregivers learn how to become involved. There are also opportunities facilitated by NKF to connect patients and researchers through NKF’s new clinical trials microsite, www.kidney.org/clinicaltrials. The new microsite can help patients find matching clinical trials in their local area within 60 seconds just by answering a series of questions about their condition.  Patients will also find real life stories from clinical trial participants and resources addressing common questions.

The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award”.

Date:
Friday, September 29, 2017