Safety of Patient Partners in SPOR projects

If there are a few people who want to get together to discuss this further I would be glad to be part of that group (my background is in ethics). There may be situations that are under the radar that people are wondering about and that would be helped by some guidance document. Meanwhile, I will do some research to see if there is something out there already that would help.

Hi Susan and everyone,

This is a very important topic you bring up and I too would love to see something possibly formalized within SPOR or some guidelines that could be used to help bring awareness that can be promoted across the research community... not just those funded by SPOR.

As a patient partner, I don't have the capacity to help put something together in the next while, but I could help move it up the chain and get it into meeting discussions and to some key individuals to start thinking about it and moving this forward in some way (I'm on the Board with the Ontario SPOR Support Unit and like some of you have solid linkages with CIHR).

I'll stay posted on anything that might move forward over here.

Here is a CIHR document for developing research partnerships with patients. Maybe people have already seen this. If it doesn't address your specific concerns that would be a starting point to develop something else.
https://cihr-irsc.gc.ca/e/51910.html#2

I am jumping in not because I have run into this personally but because this seems like a critical safety and ethics issue for patient partners. I have run into the request for patient videos some years back where the intent seemed to be mostly to showcase the organization and their "patient-centredness". The participants were left with a bad taste in their mouths. Also, this org was merged into another entity so no telling what has happened to the videos.

I agree that this should be something that we can come up with guidelines on at a minimum for our Community. This could then hopefully lead to SPOR and other orgs picking up the guidelines. At least we could have a tool for patient partners to ask questions.

I am going to suggest that those interested in exploring the development of PAN Guidelines for patient partners on this contact me directly by the PAN email hello@patientadvisors.ca and I will set up an exploratory meeting. Based on the great feedback above, I doubt it would take that long to develop. Once we have it, we can post it internally but also Tweet it out to our colleagues who are not members yet.

Thank you all for jumping in on this.
I will write to you Alies and look forward to addressing this more formally.
All Best...Susan

Intellectual property while engaged as a patient partner in research is a very important issue and most of us a very naive to the ethics and legalities as well as copyright rights, control of information and ideas, and privacy. Px need to be able to have access to legal advice.

Thank yo so much Susan.
I am in a particular (weird) situation, unsure how to handle it. Your letter has provided validation and guidance in the direction I want to go in.

POR Patient Orientated Research. This is anything but patient orientated. It is by and for the researchers with no patient protection. They may have excellent ethics and intentions to protect the patient's information but without written and signed guarantees there is no real protection for the patient.

I heard back from one of the directors of this project, with his explanation of how they do things. I won't share the entire message here, but one line seems to summarize why there has been no release or consent form provided:
"Asking for permission to share the stories before the stories are created can be awkward if people feel like they want to change their mind about the release at the end based on the story they eventually create, and we want people to feel as comfortable as possible."

I replied that if it were all in writing ahead of time, people would know what to expect and adjust their sharing accordingly.
I also wrote that changing one's mind is a right that patients have with regard to sharing healthcare information; we can withdraw consent.
This reminds me of one of those projects that Alies describes, to showcase the need to fund certain types of research; and I certainly have a bad taste in my mouth.
We don't have to agree to the video being used this way; but with no consent forms up front, and the videos being stored in the provider's account unless a participant knows to ask to have theirs removed...
...Susan

Thanks Susan,
Love the gobbledy gook " want people to feel as comfortable as possible".
Have seen this type of explanation before. Very weird, very patriarchal, IMO.

Susan- Appreciate you raising this question and sparking an insightful conversation thread. I suspect there are others who have felt the same discomfort , yet parked it aside for fear of being labelled as difficult or they believe this is the way it is , since others are accepting the terms. As well, some may not be thinking through the potential implications . I agree that it is an ethics -value issue , and glad to see PAN members stepping up. Our collective voice has more influence than a single one .TY

Yes, it will be nice to create guidelines and standards of ethics for engagement with patient advisors, for many reasons. Glad to hear that having a lack of paperwork/ethical guidelines is a situation others have experienced as well, and are ready to improve upon!

Hi Susan and all,
I've been following this discussion with interest. I find it unconscionable that the researchers don't collect this data (the videos) with a consent PRECISELY BECAUSE the participants might actually exercise their rights to control access to their personal contribution at this or a future time.

Your examples of harm are real. But also, I think these folks have violated any usual ethics for the project and copyright on the videos. Before PAN creates its own code of ethics for advocacy, it might be better to consider first (1) how a patient partner can routinely learn the ethics environment surrounding a study and (2) how a patient partner can safely blow the whistle when ethics are absent or violated systematically as in this project. It could be an individual violation or a collective one, as in this case.

I'm really quite appalled at the conduct here. Members of this team must learn that they cannot treat research participants as product/data/testament generators with no accountability on control of use and storage limitations. I wonder if they even applied for Research Ethics Board approval in advance? Sounds like it's a miss.

The awkward thing, of course, is putting whistle-blower duty on our shoulders, usually sitting at the low end of the power gradient. You, Susan, quit the project with stated reasons, but I wonder about the vulnerability of other participants in this and future projects with the members of this team. The coercive need to play "the compliant patient" to safeguard vital care relationships is vivid for many people. It isn't easy to shake this deference when moving from clinical care to research participant. Many of us have expressed in one way or another, what a privilege it is to contribute to better healthcare. That willingness must not be abused.

And when all is said and done, the junior researchers here are learning "how to do it" from the Principal Investigator. I think this avoidance of ethics is shameful and abusive.

Thanks for posting on this topic. I'm steaming mad and motivated to rattle the cage.

“With no written contact” says it all. To be drawn into a “by the patient for the patient” funded research project as a “partner”; and then provide the idea for the research only to have it handed over to a student left me gobsmacked and steaming mad at the disrespect. Also the powerlessness of the partner title. This partner”ship” is one I will never sail on again unless there are clear cut ethical guidelines both sides know and agree to.

Ethical guidelines and privacy protections are critical issues (and sometimes gray areas) that patient partners need in their roles. So too are legal protections which is even more vague. Some time ago here I asked here for examples of liability protections for patient partners. For example, as an interviewer or focus group facilitator, what protections do patient partners have from liability claims. Other team members would be protected and receive support from their workplace but the patient partners are not employed. Also, if a patient partner is somehow injured while carrying out the research partner role, what compensation would be available to them. At SCPOR we had a small working group looking at these legal issues but did not find clear answers. The health authority responded by indicating their view was that patient partners were considered volunteers and therefore covered under their policies regarding volunteers in their facilities. Not all health research is carried out in agencies under the health authority.
I welcome others thoughts
Candace

This is an important topic - legal issues may be rare, but can be very disruptive. Maybe patient partners should ask question about legal/insurance protection when they join a new organization or project, and not just in the research side of things?

I am a member of the Human Research Ethics Board at the U of Vic. I can tell you from my experience any time a research project is taken on that includes humans there needs to be definitive info collected, approved, and then utilized. Here is the info from that group it may help you with a framework that could be used. I am not sure how a SPOR group could actually think they should not be reaching for the highest level of privacy.
John
https://www.uvic.ca/research-services/home/regapproval/humanethics/index.php

There is also the partner ship issue. If we are partners on a research team and treated as equals then we are at the same level as the researchers and consent is not needed. That's an important distinction.
It seems to me with the stories that hey are crossing the line that separates partners in research from subjects of research. ( unless of course they too were telling their stories)
Annette

Thank you for sending this link, John.
The PAN working group that is forming will be looking for such forms and regulations and standards that are already available, but are apparently not yet required, for patient engagement.

Great news to hear about infra structure building for PE with respect to standards and regulations.
I look forward to the day, as well, that formal accreditation is developed for patient partners by patient partners. Accreditation is to be earned. Then funders would know what they are getting (more transactional). I believe this would create a more power balanced environment, very similar to most other professions and vocations.

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