Bait and Switch: When a researcher tokenizes patient partners after he received the funding cheque.

[Scott Simpson]

Hello folks,

This is what is happening with our patient group with a CIHR funded foundational disease specific research network.

The Institute's Scientific Director pointedly told me he wanted this project to be the model of how CIHR researchers can partner with patients. I said that my experience with HIV community-based research meant my expectations were pretty high and he welcomed that.

But, since the funding cheque arrived in Sept, the PI has tokenized the patient partners in many ways. I'm not exaggerating when I say that some of the patients at the recent and initial Steering Committee meeting felt traumatized by the disrespect and dismissal. They felt betrayed.

Next week we have our initial Executive Committee meeting and it will be the PI talking at us and expect us to endorse his plans. There is no collaboration. He's made himself sole chair of all committees and all working groups. Nothing is getting done, we don't even have a website yet, and that was supposed to be done in October.

We've reached out to a 'patient engagement' researcher and will be meeting with them tomorrow -- we are hopeful they will take an interest in studying how this project is playing out, it will be good for an independent 3rd party to witness and assess.

As patients, we fear pushing back too much, the PI can easily remove us and replace us with 'yes' patients who know little about research and patient engagement and will obediently defer to him.

I'm waiting until the Executive Committee happens, and if it goes as anticipated, then I will have no choice but to inform the Scientific Director his hopes for this project are completely off the rails.

What other options do we have to ensure that patients are not being tokenized in an overt bait and switch?

thanks,

Scott

[Toby Stewart]

THANKS Scott -- for being a whistle-blower.

IF your account is accurate, and if your anticipated outcome from the ExecCttee plays out as you describe, then this is indeed very concerning...

Especially as the initially-described model of patient engagement was probably one of the significant factors in the CIHR grant being approved.

At this point as an outside observer, I'll be interested in both following your reporting on this... and also in hearing what kind of response you might receive from the Scientific Director after you inform him how the situation has apparently significantly deteriorated from his initial engagement pronouncements.

Cheers! Toby

[Annette McKinnon]

It's disturbing to hear of this happening. I agree with Toby - the plan for patient inclusion as full team members is quite likely part of the reason they received the grant.

We all know that the HIV community is one of the most active communities, and being sidelined must be especially obvious to you.

With that particular instruction from the scientific director you really will have to do something if the executive committee goes badly.

I wonder what you think of project applications where there are 'marquee patients' involved and almost no other patients? If you have one or two prominent patients and you say that your project represents POR because the question came from the community, are these 2 plus a few more on a council who will meet a couple times a year enough?.

Annette

[Laurel Radley]

So sorry to hear this and to be reading it at this late date. I am heartened to see patients, taking a stand when they recognize Tokenism. In my experience it is still a huge issue despite all of the infrastructure and talk about patient involvement. I hope you were able to participate in the Canadian Patient partner study survey that had a deadline earlier this month. Having reviewed some applications for funding was shocked to see patients identified as partners in applications with no indication of substantive contribution. I really think there is a need for patients to consider and monitor their actual participation after they are named, and to follow up on the issue if they are not indeed making substantive contributions.

[Annette McKinnon]

Great to hear from you. The HIV/AIDS Community has been so persistent and active over a much longer time than most groups, and have had results that have made a huge difference.

The deadline for the survey is pushed back to Dec 3 so it's last chance time. It will be so good to hear from patients and caregivers about what they do, and how they got into it. Some real world data from the people who really know about patient engagement

Annette