Do we have biases? How do we deal with them as Patient Partners?

[Alies Maybee]

I am on an inquiry project to see how COVID affected PE (patient engagement). The researchers have interviewed patient partners for selected organizations and found a primarily very positive response. However, the patient partners who were independent, ie: only doing the odd engagement with the org and having many other engagements across many orgs were mostly very critical.

So I wondered if being a patient partner primarily for one org and developing deep relationships with the people there, starts to create a loyalty that biases against seeing the worts clearly. Thoughts?

If this is the case, how do we keep a fresh look at the orgs we engage with so that we don't start to excuse the things that should be improved? Thoughts?

[Rachel Cooper]

Hi Alies,

As I read your post, I was thinking about a social psychology course I took in my undergrad days. Some of what you're speaking to sounds like in-group bias: people in groups of people who share a sense of belonging have a tendency to favour their own group because having such a bias supports the quest for positive self-concept. Humans are more prone to experience in-group bias when the group is small and lower in status relative to the out-group. This tends to manifest as a liking/preference for our own group and a dislike for the other group.

This, in my view, would pertain both to people who partner with one organization, or who are more independent and involved with many organizations and are more critical.

Similarly, there's this concept of regulatory capture which similarly speaks to what you're talking about. https://en.wikipedia.org/wiki/Regulatory_capture I share all of this to say that even when people at the table are aware of the dynamics, there are sometimes broader phenomena in play that are difficult to push back against. That's not to say it's impossible, but I would have to do some more reading in my notes to find out what social psychology would say about answering your question of how to keep a fresh look at the organizations that we engage with!

[Alies Maybee]

Rachel, thanks so much for this. I thought I had heard this was a "thing" and you have identified it for me. I would be interested to know how one can deal with this.

[Toby Stewart]

Hi Alies (and PAN'ers) -- an interesting query... which got me reflecting...

I'm going to speak from my own personal experiences -- as a PFAC member on our regional hospital for one term (completed 2018/9); as a PFPAC member (ongoing) for the old HQO (now OHQ); and as an interested occasionally engaged member of our very fine rural Community Health Centre.

In the latter, there has been no difference -- other than occasioned by my self-isolation and their recent restrictions.

Regarding HQO/OHQ, there was a 'cease PFPAC travel' order after the government changed... and even though we had built a positive 'team' sense from our quarterly in-person full weekend meetings prior to the election, the sense of our 'team' has definitely diminished since then, as we were instantly restricted to fewer Zooming discussions of a couple of hours (instead of our previous extended full-day and informal evening discussions and deliberations) .... and so far in 2020, we, we've only had one limited Zoom session. I'd like to think that we could continue to make a difference through our contributions, but my impression (with nothing specifically stated to us) is that we are not 'valued' as much as previously... and despite the many political statements to the contrary, that 'Patient Partners' inputs are not as highly sought when new policies, approaches, standards, etc. are in development. It is also possible that my being a rural (non-GTA) member, others in the GTA may be more actively involved, but I'm not aware of that. (All this said, I do recognize that the political and public focus/priority is upon 'managing' their way through this C19 pandemic... but we haven't been consulted on any of their various guidelines, re-opening stages, etc..) I also don't want my comments to be seen in any way critical of the OHQ staff -- who have always been as supportive of 'engagement' as their resources and senior/political overseers permit.

Regarding our regional hospital, I found that when I raised some questions or requested the evidence supporting certain assertions/assumptions, we were not 'supposed to' question/amend proposals or policies that were already well along the way to internal approval. And when some PFAC members' suggestions for new initiatives or items that weren't on our senior Administrator's 'agenda' for our PFAC discussions, they were either sluffed off, deferred/delayed, or 'forgotten' -- IOW not seen as a priority or worthy of formal discussion/study. (That said, the Administrator in question has left the hospital... and as I am no longer serving on the PFAC (having not signed on for another term), the environment may have changed... consequently, I have no insight into how C19 may have impacted our PFAC engagement.)

I found Rachel's synopsis of 'in-group bias' to have been interesting... and if our small hospital folks were the in-group, it felt like we were 'out' -- ie. held in lower esteem by the Administration (but not all of them). In contrast, in my other two contexts (Community Health Centre, and especially HQO's PFPAC pre-election), we definitely collectively felt our contributions were both valued and actually taken into account in whatever process was seeking them as inputs.

So post-C19 in 2020, I guess that puts me into the 'critical' group -- especially respecting OHQ's use of us as 'patient partners' contributing to the C19 management activities. (That said, it could be that OHQ's stature within the new(sic) government's OH restructuring has similarly been diminished... for which I have no direct evidence and just a 'gut feeling'.) And please don't take my comments as any criticism of OHQ's staff who have always been 'gold standard' in supporting our PFPAC functioning.

[Vivian Bethell]

Hi Alies,

This is an important topic that needs to be discussed. It ties in somewhat with another discussion held some time ago on Compensation. It is my belief that we must always consider ourselves as outsiders with respect to the health care system. It’s difficult to be effective in our role as patient advocates if one identifies with only one organization or program and becomes immersed in its culture. I think it’s equally difficult to remain independent if we become tied to an organization through payment for our services (This is not to say that we shouldn’t be fully reimbursed for our expenses.)

Helen Bevan talks about the need for ‘rebels’ within an organization and I think it’s equally important for us as patient partners to fill that role too - not as a negative force but as a challenger of current strategies, systems, policies, procedures and all aspects of patient health care. This doesn’t preclude us from being promoters of improvements that health care organizations are developing and implementing and from collaborating on important projects that will improve the quality of life for all of us. The rebel role must be undertaken with much sensitivity of course. We do need to be seen as working towards the common goal of improved health care.

My experience has been that as I broadened my roles to include provincial and national bodies, my perspective as a patient partner changed. As an advisor within a small region, I was acutely aware of my ‘standing’ in the group and the need to be circumspect in my comments. Within some of these groups I didn’t feel very effective. As I branched out to engage with several other organizations, I became less concerned about my status in any group and more concerned with my role as a lived experience advisor in improving the quality of health care. Of course one must listen to and respect the views of all members, but it’s equally important to make ones own position clear.
Would be interested in your comments. Thanks for bringing this up.

Vivian Bethell

[Colin O'Neill]

I'm on couple Director-level committees within Vancouver Coastal Health, one for the hospitals and another for primary care. They are regional, bringing together leads from various geographies and institutions. Both suspended meetings during COVID. This level of collaboration was seen as more forward-looking strategy, vs the needed crisis mgmt.

The most recent "come-back" meetings have been really interesting, seeing all the major work that was done. It got me thinking, where was the patient involvement during these leaps forward? I'm now connecting 1:1 with different directors to get a better understanding of the progress and how we can apply the COVID care pathways to other patient populations.

I think patient representation is nascent in these groups and they seem to have a lot of turnover (in the future, I think compensation for the roles would help too).

To get back to biases... I think the lack of diversity in patient partnerships can create bias. My role can seem quite vague and I do a lot of 'self-starting' activity which takes time (connecting with people off-line, reading studies etc.).. and many wouldn't necessarily have that means. The constant learning curve, especially when there are gaps in meetings, also adds difficulty. These roles are unpaid.

Thank you for the thoughtful comments.

Colin O'Neill

[Alies Maybee]

Toby, thanks for your detailed assessment of your various commitments and experiences. Like you, I have found most of my experiences with the former HQO (Health Quality ON) positive and Amy Lang to be most supportive. I suspect, as you do, that the dust has not settled within the new ON Health. Having said that, the Toronto Region folks set up COVID planning tables with basically zero patient partners. Belatedly, some have been placed on the planning tables. Frankly, if we are all in this (COVID) together, then we should be planning together. They need us to comply with masks and social distancing etc. Just as we are invited in, we can be ignored or dis-invited. To deal with that, we need to be part of the structures in a sustainable way with admin and budget support. A way that is not subject to the whims of new leadership.

Which gets back to the issue of bias. The more embedded we are, as individuals, the more we are, as humans, prone to bias. I found for myself, the more different organizations, teams and sectors I am involved in, the more I can have perspective on any one organization.

Alies

[Alies Maybee]

Vivian, you raise an important consideration regarding compensation. I do suspect that your are correct, if an organization pays me as a patient partner, I am inclined to look favourably on the org. On the flip side, if I do substantive work for an organization where others are being paid and not me, I am inclined to look unfavourably on the org.

When Helen Bevan refers to rebels within an organization, those same rebels receive a paycheque from that organization. I guess my conclusion is that compensation does not automatically confer bias. Being paid can alert one to a potential for bias and therefore some soul-searching when doing the work.

I am not quite sure how you are looking at the lack of diversity and bias. I think any work resulting from a lack of input across a diverse group risks having bias built in. I also think, if as patient partners, we only work on projects together with others just like us, we can't help but reinforce any unconscious biases. To counter that, we need to get to know as many patient partners across all sorts of backgrounds and experiences to open our minds and hearts and enlarge how we see the patient/caregiver experience and therefore how we might question and proffer insights in our work. I know, for example, I have learned a lot from a self-described "brown person" about how the system treats people differently and not in a good way. I have learned from another about the challenges of addiction and homelessness. I can't speak to those experiences but I can sure ask questions and ask for input from others to get a clearer picture of what is needed when doing some work.

Thanks so much for your contribution to this discussion. Alies

[Alies Maybee]

Colin, I think some of my reflections in my responses to both Toby and Vivian pertain to the comments you made as well.

I agree that many of us find the need to be self-starters as a way of learning and understanding the experiences of others. Some of this is reading the research that exists especially if it draws heavily on the experiences of others different from ourselves. And some of this is learning directly from others that we encounter. Regrettably, COVID has made the latter much more difficult.

I am working with a researcher out of Women's College Hospital here in Toronto to help co-initiate a diverse community of people interested in contributing their perspectives to healthcare for quality improvement and safety as well as research. As this takes shape and as I am permitted to share, I will let the PAN Community know how this enfolds. My personal goal is to ensure the diverse community steers its own ship. So we'll see.

Thanks for jumping into the discussion. Alies

[Bill Holling]

Hi Bill Holling here I don't have your contact info so I went this way.

What did you think of that presentation and survey last week. I thought it would be a good thing in 40 or 50 years when we can get the doctors using it, internet to everyone and everyone computer literate again a good thing for the PHD's but Joe farmer in Chatham-Kent wonders what they are talking about or the family on social assistance wondering where they are getting their next meal.

Damn I'm getting crochity in my old age but I have seen this type of program before it will be interesting if we see it again .

I have retired from most of my commitments just on the advisory committee to the CEO at the hospital working with the remains of the Lhin and a little for Health Ontario

Take care

Bill Holling

[Alies Maybee]

Bill, I presume you mean the ON Digital Health Information Standards orientation and survey. I thought it was quite poor. The orientation was well done but the survey???

I didn't think it appropriate that patient partners have to evaluate the impact on the health system or population health. While I believe the Quadruple Aim is a useful tool and way of looking at things, I felt like Cinderella's ugly step-sister trying on the glass slipper. It didn't seem to fit without cutting off toes. My comments at the end were

"Survey seems to be silo focused and not thinking about data from a patient's point of view. For a patient, there should be one patient record in ON that is contributed to by all the providers the patient sees as well as the patient. It should be visible to all that the patient consents to as well as those allowed by law for treatment purposes. The patient record should include lab results which should not have to be accessed separately for either doctors or patients.

If the province can consolidate all billing information, why can't it consolidate all patient data? It could make this data available using standards to approved vendor applications -- in hospitals, primary care clinics, LTC, homecare etc."

Another point:

I am coming to believe that the internet should be provided free to all Canadians just like the highways are primarily funded from our taxes. I think this is an equity issue. It would mean ensuring remote and Northern communities would need reliable low cost electricity which is not the case currently. Such a lack of will on the part of all governments. Sigh...

I am with you on the crochity bit. Alies

[Gwen Piller]

Alies,
As usual Im a bit late to the discussion. Im not sure it matters how many organizations but the length of time the committee members have been together.
For Example: I have one PFAC which I recently left and still consists of the same 8 founding members plus a few new members. This PFAC has a difficult time keeping new members as there is such a close bond between the founding members no one feels welcome, and we argue and bicker like a family.
Terms of Reference: Length of term needs to be adhered to with a year off between the 2nd consecutive term to bring in new faces and break up bonds that develop at the table.

I have done everything from one committee at a time to over 10 committees at a time and from PFAC to Board of Directors. Its never been how many committees its the bond or friendship which creates loyalty that develops between members over time that makes the difference.

Toby talked about HQO PFAC weekend meetings, that provides lots of time for socializing, bonding and developing friendships outside committee. Where with the 10 to 12 committees Im often on I dont have time and run from one meeting to another and don’t develop personal relationships.

of course we are all influenced by personal biases based on our personal beliefs and core values but thatâs another interesting discussion.

[Alies Maybee]

Gwen, I am late responding to you but find your experience with the founding members interesting and instructive. I'm not sure that the answer is to keep breaking out the bonds by enforcing a Terms of Reference time limit, however. I think it is more about how to be inclusive as a group over time. Welcome more thoughts on this.

[Gwen Piller]

Alies, I have been apart of municipal committees which adhere to the terms of Reference time limits. Why I see it beneficial to a committee with strong bonds is it allows space for new people and new ideas breaking the idea of bias you are concerned of. All members are welcome to return to the committee after a one year break for another term. The idea is to stagger membership so you have one or two new members each year. Members may be allowed to serve a maximum of 2 terms then must take a year off before serving a third term. Otherwise it can be very difficult for new members to integrate into a committee with bias and that is overly bonded. The new member will have difficulty fitting in.