Patients in Research Issues
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What goes right/What can go wrong?
Today I have an issue of what goes wrong.
I received email that a project I was a patient partner on was published. The paper was not sent to me beforehand, so last week when the abstract showed up online I was surprised, and thought of asking for the full paper.
When I saw the ful paper today I was listed, but affiliated with an organization I have nothing to do with. So I should be thrilled but I'm not
Annette
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Hmm...good questions, Annette.
It sounds like your name was attached without any notice and given an affiliation that wasn't correct. I'm surprised you weren't even notified as to what was going on, especially since your name was listed as an author.
Perhaps this is another learning opportunity for this team about working with patients that you might be able to address with them what would work better in the future. And in future -- ensuring that is clear from the beginning as to what level of engagement (using the International Association for Public Participation Scale, or whatever scale works best for you and your team) and what roles/responsibilities are wanted from the patient and sorting out what roles the other team members have, so everyone is clear on how things work.
I think I would feel similarly if my name was attached to something and I found out about it by chance. I hope there is an opportunity for the research team to learn from this so their future endeavors are more considerate of the patients working with them on the team.
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Thanks for the thoughts. I did know I would be listed on the main paper that is not published yet, but I was unsure about this first paper. I knew the researcher had done posters and was going out and talking about the findings but I only heard that at our meetings when the researcher mentioned how successful it was.
The supervisor of the project apologized and agreed that page proofs of papers should be sent out to everyone for a final proofread before finalizing for a publication but she does not always do this, especially with co-authors (patient partners and researchers) whom she knows are are extremely busy and would trust her for the final review.
She also said that conversation about all co-authors reviewing the page proofs should have been explicit right from the start, and continue throughout the project.
So it's pretty patronizing to the patient partners. Reputation matters to patients too. I doubt there are many researchers who would not even proofread their names and affiliations at the very least.
Annette
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Hi Annette,
This experience of yours needs to be considered as we build the ladder of engagement from the patient perspective. Perhaps CIHR needs to develop additional criteria that ensures there is more than the name of the patient in the support for the proposal. I'll think about how to ensure that a proposal goes forward ensuring the legitimacy of the support by the patient.
Lorraine Bayliss
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Thanks Lorraine
I plan to approach the specific issue very carefully so that I don't identify the researchers, though it's difficult when anyone can check and see that I am named on a very small number of papers.
Still, it's a good learning experience, and I can use it in the future.
On a project recently I was saying that an experience in research that is not positive can still be satisfying because it still adds to your knowledge. That seemed to be quite a hurdle for the researcher. Prevailing wisdom seems to be that engagement that is not positive wil keep patients and family caregivers from getting involved in the future.
Annette
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Hi Annette,
I agree that an experience that is not positive can still be a learning experience. I too have found my involvement in a research project to not be ideal as I was only engaged when the final submission was c.c.'d to me. I have continued to work with this group first articulating my expectations. It has turned out to be a positive experience that I has felt left me feeling valued as a member of the team.
It is important to foster a relationship that is collaborative and demonstrates mutual respect and understanding from both parties involved - patients and researchers. I appreciate that patients "lived experiences" brings expertise to the partnership and researchers training and expertise in the field of research brings invaluable contributions to the research process and improved patient outcomes.
My intent was to somehow put a required signature of the patient advisor or some alternative into the proposal to ensure this is not overlooked. Even a contractual agreement at the outset listing (not just assuming) the partnership expectations at the beginning would be helpful.
Also how we interact with the team can be value added and allow researchers to realize that patients bringing added evidence, support and engagement is a great resource not to be overlooked.
Lorraine Bayliss
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Interesting discussion. I am new to this group, and, new to being involved in research.
While I am listed as a collaborator on three projects with the same lead researcher, I had not thought about finding out the specifics of what that meant.
Thanks.
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My feeling is that as patient partners in research, we need something of a "job description" for each project detailing out what we will do and when this occurs in the project; whether we are going to be cited as a co-author or contributor and what that means and how our name/relationship will be used.
I, too, have experienced similar situations to Annette's where my name is used with the wrong affiliation; or where I have done substantive work on something and I am not acknowledged and so on. It is messy out there but I truly feel virtually none of this is due to ill will but due more to a lack of knowledge and in some cases outright incompetence in running a project.
I am interested in what we think patient partners need to be trained up on and one element is the possible roles we can perform as a partner in research. This is to Susan's point about knowing what being a collaborator can mean specifically.
Alies
