Safety of Patient Partners in SPOR projects

[A Former User]

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!

[A Former User]

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.

[A Former User]

“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.

[A Former User]

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

[A Former User]

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?

[A Former User]

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

[A Former User]

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

[A Former User]

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.

[A Former User]

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.

[A Former User]

Annette, Your assumption of equal respect and sharing that should be afforded a patient partner is exactly what needs to be delineated so everyone understands and operates within the same set of guidelines. At the moment, everyone approaches the project with their own perceived set of principles that can, and do, differ widely .

[A Former User]

Own perceived set of principles..Agree 100%.
There is also the embedded hierarchy of the team and interests of each. PI, RA, others, and patients. Lots of elephants in the room.

[A Former User]

I had a chat with Sue Robins author of Ducks in a Row.
Good reading for an overview of what has been done, what could be done and suggestions as to how to go about it.
John

[A Former User]

Yes, and the thing that is most important to me and that Carolyn also mentioned, is the many people who genuinely want to use their experiences as a patient to improve healthcare, but don't know to ask about boundaries, contracts, privacy, sharing, etc. So, looking forward to improving the process for how we can make healthcare better.

[A Former User]

There is a CIHR website that covers ethical issues

Ethics Guidance for Developing Partnerships with Patients and Researchers

https://cihr-irsc.gc.ca/e/51910.html

[A Former User]

Here is another contribution to this discussion, from Australia, following up on Kathleen Carlin's question about legal provisions to protect the patient partner.

"Australia may be a special case in that the conceptualization of volunteers as workers is now formally recognized by law. For example, both waged and unwaged workers are treated equally in the Work Health and Safety Act 2011 as well as in the Fair Work Amendment Act 2013, which extends protection to volunteers experiencing bullying in the workplace (McGregor-Lowndes, 2014)."

This extract is drawn from a fascinating paper from Australia in 2019 in the journal "Nonprofit and Voluntary Sector Quarterly". I believe the article is open access to download here: https://journals.sagepub.com/doi/full/10.1177/0899764018809419
"Rethinking Volunteering as a Form of Unpaid Work" by Charlotte Overgaard
This article is intended as a provocation for further discussion about the volunteer as unpaid worker.

The definition of "volunteer" is not a perfect match to our Canadian concept of patient partner. Volunteer in this article is more about a person providing labour that is parallel in some respects to patient services provided by workers, but on a more casual and less consequential basis. That coincides with the more traditional hospital or hospice volunteer who interacts with in-patients for conversation, helps with meal time, runs a library or magazine service, etc.

I admit that much of this harkens to an earlier generation when bed allocation and in-patient life was less acute. However, you may find, as I did, that there is much food for thought in the article. My view of current patient partners is that they/we provide equivalent labour value as a program designer, evaluation advisor, instructor, governance committee member and researcher.

Also, I recall from over ten years ago when I was "on-boarded" as a Patient and Family Advisory Committee member in Vancouver Island Health Authority, I had to sign a liability waiver. This was a holdover from the "volunteer" who provides auxiliary patient care services or worked in the hospital auxiliary gift shop.

[A Former User]

Carolyn, thanks for the helpful Australian material. So interesting how they have dealt with the concept of "unwaged" workers. Love the term!

[A Former User]

I was one of the individuals who signed up and completed the Digital Storytelling Workshop which was supported by the IMAGINE SPOR Network. (Being referred to in this post)

I thoroughly enjoyed the process and appreciated the opportunity to be a part of it. I gained knowledge and skills on how to craft a meaningful story as well as create a Digital Story from start to finish in a supportive environment. Importantly, This was not a research project and we were not participants/subjects in research…this was a workshop to learn how to create a digital story.

I felt comfortable with the guidelines and expectations and had no concerns that my story was going to be shared without my permission. In a few of our sessions we were informed about the ongoing consent process as well as learned about copyright considerations. Everything was clearly outlined in regards to the individuals owning their stories, providing forms for permission to release if there’s an opportunity to share digital stories etc.

Digital Storytelling is a great way for Patients to share their lived experience, to bring awareness to a particular disease, the patient journey and ways to improve our healthcare system. (These are just a few examples).

Patient Safety & Ethics in Sharing our Story and more broadly in patient engagement, is an important topic that needs to be addressed and something PAN will be pursuing with a member committee over the coming months.

[A Former User]

Hi Sandra,
Glad you enjoyed your SPOR project.

Digital Storytelling can be an important way for patients to share their experiences.

The program that I was in, provided by a SPOR team, did not provide any forms for permission to release as far as 3 weeks into the project, and I dropped out, as I mentioned in my original post.

Creating standards so that patient partners have knowledge, control, and signed consent about disclosing their personal private healthcare information at the outset of a partnership, whether it is for research or for a workshop to create digital narratives which may be used by that SPOR team, is the item of concern here.

Best regards,
...Susan