Engaging Patient Partners in Measuring Patient Engagement

Written by Renee Greene with Janet Gunderson

One of the features of patient-oriented research is that patients identify research priorities – the things most important to the people affected by the research. Patient Partners play a similar and equally important role in the Saskatchewan Centre for Patient-Oriented Research (SCPOR). They have unique perspectives and valuable life-experience that no amount of formal education can achieve, and so SCPOR staff work with Patient Partners in almost everything we do – it just makes sense!

In 2018, Patient Partners were asked to look at a set of leadership grant applications, and to do so from a patient-oriented lens. Janet Gunderson was among the Patient Partners engaged in this process. She had experience reviewing grants with the Arthritis Society and the Canadian Arthritis Network, and so she was accustomed to working with rubrics or specific sets of criteria. That was the piece that seemed to be missing from the SCPOR process, however.

“We expressed a need for some sort of tool so we could look at each application the same way for fairness and determine the criteria we were ranking by,” Janet says. “SCPOR responded to that request by forming the team that would create the PORLET.”

The Patient-Oriented Research Level of Engagement Tool, or PORLET, provides a standard set of criteria for determining the level of Patient Partner engagement on patient-oriented research teams. It was developed by a team consisting of SCPOR staff members and Patient Partners. Janet adds, “I was happy to be on the working group because I felt my concerns were addressed, and I was an equal member of the team; sometimes people on working groups don’t feel that they are equal team members. SCPOR came through, and they’re still following up on the PORLET.”

Since its inception, the PORLET team has met almost monthly and has made note of strengths and weaknesses in the tool. In 2020/2021, the PORLET underwent reliability and validity testing . Janet says, “I think that exercise was important because we’re a little biased – it’s our tool!” Overall, the tool scored well, however some areas of improvement were noted.

The team addressed recommendations by developing a companion document, clarifying potentially confusing wording within the PORLET and re-organizing and providing more consistent cues for each of the five criteria. With that, the PORLET 2.0 was created!

At around the same time, the Indigenous Health Advisory Council (IHAC) launched the Indigenous Research Level of Engagement Tool (IRLET). Initially, when the PORLET was developed, the team felt it was important to incorporate principles of Indigenous research but realized early on they couldn’t do an effective job of each in a single tool. IHAC took on the role of developing the IRLET, which measures the degree to which a given project meets patient-oriented research criteria in the context of Indigenous communities. The IRLET is most effective when used together with the PORLET. It’s important to note that the PORLET and IRLET are used to measure the level of patient engagement - not scientific merit and are therefore not intended to be used on their own.

Looking back over the past several years, Janet feels the PORLET has had a positive impact on patient-oriented research. “The part I found very validating to me is that I’ve seen the grant quality improve. It’s not strictly because of the PORLET, but it’s helped! Applicants have used it, they’ve had better experiences working with patients, they’ve found out patients can do more than they thought they could. With the first set of grants I reviewed for SCPOR, some thought a focus group was patient-oriented research. Now they tell us how they’re involving patients – is it tokenism or true involvement? Do Patient Partners have decision making powers? All those questions get answered.”

And while the PORLET was not initially intended as a grant writing tool, it has proven to be useful in that regard. Says Janet, “Researchers were encouraged to look at the PORLET and I think it gave them ideas of how to work with Patient Partners at a deeper level; like including them in knowledge translation or asking them what outcome measures they thought were important. After speaking with people with lived experience, researchers would often find out that what they thought should be a patient priority, in fact, was not.”

Janet’s work on the PORLET has provided her with unique opportunities beyond grant reviews. In 2018, she joined the PORLET team in presenting at a national conference in Ottawa, and the following year at a shared decision-making conference in Quebec City. She has also presented virtually during the pandemic and is now co-chairing the grant review committee at SCPOR. “It’s a little nerve wracking at first – I have never done that before, but of course the SCPOR staff is there so I’m not on my own.”

Despite what some days feels like a full-time job, Janet sees herself continuing to immerse herself in patient-oriented research volunteer work because she sees its importance and feels it is relevant to everybody. “There’s a lot [of patient-oriented research] going on now that there wasn’t five or ten years ago, and I hope patients are involved with research forever more!”

And hopefully, tools like the PORLET will help make that a little easier for everyone!