Patient Data Access News

Patient Engagement Low in Patient-Centered Research Protocol

Research indicates there is not enough patient centricity and patient engagement in research protocols for kidney disease.

patient engagement patient-centered research

Source: Thinkstock

By Sara Heath

- Medical research needs to better measure patient-centered outcomes and include more patient engagement efforts during study design, according to research to be presented at the National Kidney Foundation 2018 Spring Clinical Meetings.

The survey of over 1,500 healthcare and kidney disease stakeholders, including nearly 700 kidney disease researchers, found that fewer than one-quarter of researchers have consulted patient needs and preferred outcomes as a part of their kidney disease research.

Kidney disease researchers are also not publishing their study results in places that are easily accessible for patients. About forty-seven percent of studies are published exclusively in medical journals, as opposed to other media non-clinical laypeople may view.

Kidney disease patients and their family members corroborate these findings, the survey found. Ninety percent of patient and family caregiver respondents expressed interest in participating in research project development, but have not yet been asked to do so.

These numbers are cause for concern, according to lead author Teri Browne, PhD, a researcher at the College of Social Work at the University of South Carolina. There are a number of benefits related to patient engagement in research development.

"Getting patients engaged early in research will help insure the data, device, or drug is meaningful to patients and patients are willing use it," Browne explained.

The medical community places great value on patient-centered research. Many research initiatives involve treatments and other protocol that may directly impact the patient. As such, medical professionals need to acknowledge the role patients play in research development and make an effort to better involve patients and caregivers.

Patient-centered research must also account for the patient when disseminating results. It is not useful when new medical breakthroughs are not communicated properly to patients, caregivers, and other patient advocates.

Patient and family caregiver respondents in the survey stated that they wanted easier access to research results, Browne and colleagues said. Additionally, patient and family member respondents have said kidney disease research should help explain the biologic issues related to a certain kidney disease.

The survey revealed barriers to patient involvement in kidney disease research, including difficulty doing research in dialysis and disease treatment facilities, lack of funding for patient engagement in disease research, and lack of knowledge about how to engage patients in research.

Patients also reported their own barriers to participating in kidney disease research, including travel restrictions, limited understanding of research, and lack of awareness of research projects.

According to the Patient-Centered Outcomes Research Institute (PCORI), those patient-facing barriers would not exist if researchers considered and consulted with patients during study development. For example, research information should be written in lay language and should be marketed to a non-clinical audience.

A 2017 article published in the Annals of Family Medicine and commissioned by PCORI also stated that patient-centered research must be accessible for those who are not medical professionals. Research goals and protocol must be clearly stated, results should be understandable, and mechanisms for patient participation should be hassle-free.

“We all appreciate that oftentimes when we hear about study findings, it may not necessarily reflect information on what’s important to us as patients or caregivers,” PCORI Chief Engagement and Dissemination Officer Jean Slutsky, PA, MSPH, told in a previous interview.

Conducting patient-centered research is essential, especially as patient engagement increasingly becomes a priority in healthcare. If medical professionals are expecting patients to be involved in their own treatment, medical research must be accessible for patients.

“Patients are faced with making medical decisions about their care all the time. If they don’t have the information to help them make those decisions, it’s a disadvantage for them,” Slutsky concluded. “The more research is funded around questions that they would want answers to and outcomes that are important to them, the more likely that it will be that the research is useful to them when they are faced with healthcare decisions.”


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