By: Priska Stahel, ORT Times Science Writer
A wide chasm exists between research discoveries and improved treatments, diagnostic procedures or preventative measures for patients. Patients themselves might be the solution to bridging this gap.
Historically, patients have been involved in research solely as study participants with little input in study design. Consultation with patient groups early in the research process gives voice to their concerns and guides research towards questions that are pertinent to them.
Canadian Institutes of Health Research (CIHR) is tapping into this resource by implementing a national Strategy for Patient-Oriented Research (SPOR). This challenges scientists to consider patients not only as study participants, but as vital sources of insight into the realities of living with the condition of interest.
Diabetes Action Canada – A National Network of Patients and Researchers
One such CIHR-funded SPOR network is Diabetes Action Canada (DAC). This brings together 75 patient partners and 99 researchers to tackle patient concerns such as diabetes complications, aboriginal access to health services, and concerns facing immigrant and francophone patients.
Patient groups meet eight times per year to share their lived experiences and propose research priorities. An annual meeting facilitates bidirectional learning between patient partners and researchers to highlight research advances and ongoing patient challenges.
For students and trainees, this annual meeting is preceded by a workshop to brainstorm strategies for patient-oriented research alongside patient partners. The prevailing sentiment expressed by patients was the need for open communication that demonstrates mutual respect between patients and researchers.
Implementing Patient-Oriented Research in the Biomedical Field
As an example of patient-oriented research, the need for simplification of treatment regimens is often expressed by patients with type 1 diabetes. This led Dr. Bruce A. Perkins to address whether adding a drug to an automated artificial pancreas system could alleviate the burden of carbohydrate counting. This study, initiated in consultation with DAC patient partners, provides direct evidence to address immediate concerns brought forth by patients.
As a post-doc funded by DAC, the concept of open communication with research participants resonated with me. At the time, we were struggling with patient recruitment for a study involving healthy volunteers. We probed potential subjects more directly to understand their concerns. Together, we identified that allowing subjects to move more freely between critical time points during an extended clinic visit would greatly improve their experience. We amended the protocol and consent form, and had greater success in subject recruitment, allowing us to complete the study earlier than expected.
Patient insights can also be gleaned from sources like Cochrane.org, which generates systematic reviews on topics that are pertinent to evidence-informed healthcare but may not be a priority for typical scientific journals. This can help scientists develop strategies to address these questions in alternative models and inform clinician scientists to consider relevant research endpoints.
To improve translatability of health research, CIHR will more frequently award proposals that incorporate patient perspectives. Researchers can adapt to this funding environment by joining networks like DAC that facilitate open communication with patients to gain insights into their lived experience.