WHAT DOES PATIENT-ORIENTED RESEARCH (POR) LOOK LIKE?

The meaningful engagement of patients and family members (PFAs) in health research takes many forms. In the example below, Patient Partners were engaged throughout the process. Investigators partnered with a Marshallese community in Arkansas in order to co-create a research agenda that would address the Marshallese health concerns. The top health concern for this group, discovered through surveys and interviews, is type 2 diabetes. The investigators then engaged patients, family members, and local health care providers to decide on whether diabetes prevention or management should be the priority research topic. The research question became: As a Marshallese family with type 2 diabetes, what can we do to manage our family’s diabetes and improve health outcomes? By partnering with local health care providers, the investigators were able to learn what interventions had been tried in the past, and with input from the community they were better able to understand the limitations of these interventions. Previous interventions focused on “self” management, which was not conducive to the Marshallese collective culture. Even their meals are shared from one pot, and refusing food is seen as rude. The intervention was therefore re-invented as a family intervention. The investigators wanted to have random assignment to intervention or control group to increase scientific rigour, but the community and health care stakeholders were in favour of letting the families choose the intervention they wanted. It took much discussion and education about research, but the group finally agreed on random assignment. Outcome measures were also a subject of lengthy discussion, with the researchers and health care providers recommending hemoglobin A1c as the primary measure of statistical analysis. The group agreed that other outcome measures validated on minority populations should be used as well. While the Marshallese community Patient Partners chose not to be involved in the quantitative analysis, they did participate in the qualitative analysis and also helped adapt survey/interview instruments for language and culture. Consensus decision-making was used through the research design process. Stakeholders were encouraged to share their perspectives with the goal of balancing community and cultural aspects with research design and financial constraints. Although some issues required more discussion than others, the group was able to achieve a balance between community concerns and sensitivity, and robust research process.

McElfish P A, Goulden P A, Bursac Z, Hudson J, Purvis R S, Kim Yeary K H, Aitaoto N and Kohler P O. Engagement practices that join scientific methods with community wisdom: designing a patient-centered, randomized control trial with a Pacific Islander community. Nursing Inquiry, 2016 Jun 20. doi: 10.1111/nin.12141. [Epub ahead of print]

WHAT HAPPENS AFTER WE RECRUIT A PATIENT PARTNER?

SCPOR can help with Patient Partner orientation through training. We offer a general orientation for Patient Partners. This is a 30 minute, internet based module you can do in your own home. If you are interested, contact our Patient & Family Centred Care Team. We also offer more specific training about patient-oriented research. See the News and Events page for a description of the training modules and upcoming dates for training in Regina and Saskatoon. The Patient Partner can register for these courses online by scrolling to the calendar and clicking on the module they are interested in. It is a good idea for others on the research team to attend these modules at least once as well, preferably with the Patient Partner. Discuss the opportunity with the Patient Partner and determine how they would like to be involved, e.g., what time of day can they meet? How involved would they like to be and in what capacity? You may want to have the Patient Partner complete a confidentiality form or criminal record check if they are going to be reviewing data or working with vulnerable populations.

WHAT ARE THE WAYS PATIENT PARTNERS CAN CONTRIBUTE TO THE RESEARCH TEAM?

The list of possible ways patients, families and communities can contribute is considerable – see this diagram – and will vary according to the research method. Interested patients do not need to sign up for every aspect of a research study. They may in fact only be interested in certain activities, such as contributing to the discussions on research topic or recruitment, or on knowledge translation. Others may wish to be involved in the whole process from start to finish. Click here for CIHR’s Patient Engagement Framework.

HOW MANY PATIENT PARTNERS ARE NEEDED ON A RESEARCH TEAM?

Each research project should have a minimum of two Patient Partners engaged as advisors in their project team. In addition the research team may consult or engage with other patient populations or groups. For example, you may connect with Patient Partner councils, patient advocacy groups, or health charities.

HOW ARE PATIENT PARTNERS RECRUITED FOR RESEARCH TEAMS?

It is ideal to recruit a Patient Partner who has some experience, either as someone who lives/has lived with the condition under investigation or who cares for a loved one with the condition. The research team may ask clinicians to share the opportunity with patients and families in their care. Although clinicians cannot share the names of their patients without consent, they can talk to the patient directly and ask them to contact the researcher directly. As well, the research team can create brochures or handouts for the clinicians to give to patients, or leave in their waiting rooms. The SCPOR patient engagement platform can also help by putting out a call to our network of Patient Partners.

ARE PATIENT PARTNERS COMPENSATED FOR THEIR PARTICIPATION ON THE RESEARCH TEAM?

It is appropriate to provide honoraria and expenses for Patient Partners. Click here to see the patient honoraria policy. For more information please contact Patient & Family Centred Care Team.