"We struggled for meaningful engagement opportunities"

[Annette McKinnon]

This is a quote from the summary of a research paper I am involved with. I think that it illustrates the researcher's dilemma in two ways.

1. Was the project actually one that patients could naturally be involved, without a struggle (or should it have been better planned?)

2. The complaiint about finding patients, maintainng relationships

"For the limitations, while patient partners were consulted on the original design, we struggled to find meaningful engagement opportunities throughout the research process. Finding patients who wanted to and were able to be involved throughout, and then maintaining these relationships over long research cycle was a challenge. That said, we see great value in the including the patient voice in the research process."

[Lorraine Bayliss]

Annette,

Finding patients who are willing to engage is a challenge. The Partners in Research training program is quick to find willing researchers but there is a limited response from patients. At the recent Primary Care Research Group Conference in Montreal, at the TUTOR class as well as at Knowledge Translations workshops the group that has impressed me the most are researchers teaming with the Indigenous Population. In all cases, not only did this marginalized group help shape research, disseminate the findings but also members of their community co-presented in a manner that won positive feedback from those in attendance at many venues.

I have tried to recruit patients amongst my friends but they feel that they have been well served by the current system (cancer survivors, including those living with non Hodgkins lymphoma) those who did not have a great journey in our healthcare system but the outcomes were everything they hoped for. Is this reflective of a two tiered health care system? On the news lately we have heard about the fact that those with a family doctor, top health care providers have more ready access to the health services available. This population has more comfort with online training strategies but do note see this initiative as worthy of their time as their experiences have been for the most part positive.

Perhaps the issue is not researchers'! We can't continue to approach this important initiative in the manner currently used. How do we reshape our approach?

[Annette McKinnon]

I am wondering if it's the approach to finding patients.

The researchers have self selected from even before they began their formal education in research, or in the fields where they specialize. They are far from being the general public in the way that patients and caregivers are, because they identified the interest long ago.

When I talk to people I know about getting involved, when they are family and friends, I too find very little interest, even when I know they would be really good at it. It takes a real commitment of time just to get to the low levels - maybe that's why many former health professionals get involved.

Still, I don't think patients should be pressured to attain this deal diversity, or feel responsible for this lack.

Annette

[Lorraine Bayliss]

I agree. I realize that there is a genuine interest on the part of HCPs with some being responsible for starting support groups such as Type 1 Diabetes Think Tank and doing so very successfully. Working with patients directly over time has resulted in sincere empathy for patients and a real desire to make a positive difference for those living with challenges in their daily lives. I believe research dollars are much more likely to result in better outcomes when research addresses patient's voiced challenges. I think that those researchers who have access to blogs or or support groups are in a better position to identify and seek to research patient's articulated needs. It seems like a good research topic to develop strategies that yield genuine patient engagement.