Rationales for including patients

[A Former User]

I believe that for many patient advisors or patient/family/caregiver advisors, there is a desire to pay it forward, or give back, or contribute to improving healthcare for others, based on one's personal healthcare experience. So this is the motivating force to step out, leaving one's comfort zone, in order to engage with people such as service providers, clinicians, researchers, policy makers and of course other patients and/or family caregivers of patients.

Unfortunately, once the decision is made to help, one realizes how truly foreign and complex the healthcare playing field is. Thus, over the years patient advisors and family advisors have formed their own peer groups in order to offer mutual support, share stories, build consensus about what the gaps are and what the solutions may be to fill those gaps. As patient voices (aka taxpayers voices) have become more vocal, government has taken notice and after some push and pull, give and take, and to and fro, decided that research funding (the basis of all medical and social science) must be tied to, as much as possible, actively "engaging" the patient.

Patient advisors and family advisors suddenly are being courted by government, researchers, foundations, and the like, to participate with healthcare professionals in myriad of activities with the ostensible objective of improving healthcare. Patient advisors feel they are being heard and are eager to help, healthcare professionals feel they are helping patients, and are happy to get more funding. Except that most patients, unless they are seasoned patient advisors, do not have a good understanding of the intricate workings of the healthcare system, its economics, politics and procedures. As for the healthcare professionals, most have never engaged patients, they have only ever engaged the illness patients report to have. Now these two groups plan to become partners, teammates, collaborators, to undertake the monumental task of changing the healthcare system, to say the least.

I think these are still early days for patients/patient advisors/family advisors to participate in the management of their own healthcare and, through their expertise, help improve the healthcare of others, and of the system. By the same token, healthcare providers, researchers, and policy makers need training to deal with patients as persons and not illnesses. This costs money and so far there is little or no research funding for this kind of investigation.

I think that patient advisors and family advisors have much to offer in the changing landscape of healthcare. And they are definitely getting better at doing what they do. And even though it's easy to sometimes get caught up in the complexity of healthcare, I think staying on message is vital. This means reminding ourselves of the motivating force that led us to where we are as patient and family advisors. It also means developing our patient and family advisor organisations through teaching and training so we understand healthcare systems, as well as inviting healthcare professionals to be part of our mosaic. And most importantly I believe it's important to support each other, peer to peer, listening to our collective stories, lending a helping hand, caring and sharing wherever and whenever we can.

Bonne journée

Mary Anne

[A Former User]

There are some patients who I love to partner with, and I really appreciate that there are 2 of us so the other of us can follow up on what is sometimes a passionate (in a controlled way) statement and fit it into the framework that is familiar to all of the others around the table. That is a strength that develops slowly, and I could use some coaching in that area.

This week I talked to a researcher who quoted our member Delia Cooper to me because of her strong feelings about having at least 2 patients on every project.

It really is tough being the only one in the room speaking from long term experience with the system as a patient or family member, rather than immersion in it as a health care professional. Last night in a tweet chat I picked up a new term for chronic patients - we're 'super users'

When I woke up today and thought about how much of a difference I may or may not be making, I felt supported by the fact that there is a whole group of us here. I've been proof-reading a guide to engagement that a contact has written, and she talks about mentoring and support for and by patients and gives PAN a mention! I hope that stays in the text.

Annette

[A Former User]

Very "comforting" discussion... no haven't lost it .... yet :)) , thanks to my colleagues for sharing their feelings/experiences or, their "experiences" that gave rise to their "feelings/emotions".

When one is the only Patient Advisor (PA) on a project, one IS definitely the "loneliness number". I sometimes, when in a meeting, realize I don't understand, comprehend, cannot make sense of what is being talked about (my EXPERIENCE) that gives rise to me FEELING, "incompetent", and to question the status of my education "what are they talking about & why can't I understand the discussion?".

Sometimes, when I'm mindful, the experience gives rise to the feeling of "compassion" for those who don't "know how to have a discussion on a level that ensures a shared, mutual understanding among the group." When I am "mindful", feeling that compassion, I can usually interject with a raised hand and use a "positioning" statement with the group i.e. (why I'm interjecting, what I'd like them to do, providing them with a benefit to them, if they do it)... E. G.

1. WHY THE INTERJECTION.. "excuse me, we've been discussing __X___, and I'm not fully understanding what __X__ means"

2. WHAT I'd LIKE GROUP/SPEAKER TO DO: "please, will you.. .. "explain __X__; what you mean by ___X__"; "elaborate further on X"; "give me an example of__ X__", "help me understand/see how ___X__ links/applies to ___X__ ,

3. BENEFIT TO SPEAKER/GROUP: so I can better see the connection/contribute value from the PA perspective to our discussion?

Sometimes, as my other colleagues have mentioned, I sign up enthusiastically, ASSUMING, the project leader(s) will provide me everything I need to know to have a productive group outcome. And I further ASSUME the group facilitator has the right skills, competencies to facilitate our meetings...he/she is a good planner, organizer of meetings, sends agenda and relevant material out in good time, in plain language, communicating, using language everyone understands, has good command of group dynamics and can ensure all participate, can manage, stay on the agenda, & knows how to manage different participants' behaviours... That is PLAIN WRONG of me. I, have learned, if at the outset of the "call for participation", the information I need is NOT provided up-front, I have to ask the questions before I commit. This ensures it will be a relevant, meaningful, productive engagement for me and them. I did have one project where I signed up, making wrong assumptions and started down the road only to discover, the PA role existed to check the boxes. I simply could/would not continue. I provided constructive feedback to the coordinator-organizer as to what was missing in the way of information. Discovered the Project MGR was leading 3 projects, was having the project coordinator/organizers facilitate teleconferences and really was out of his depth. He could not answer easy questions about the project.. not his fault, of course. But a lack of project leadership, facilitation skills, on this project didn't constitute the right environment for "patient engagement" or, eventual success.

I am now involved in another project I am passionate about and to my good fortune, have another PA on the project... OMG kindred spirits. We've already, in independent interviews before we met, told the project leader we do not want to be tokens. We've attended one meeting, have received materials post the meeting that we met to discuss on our own. We determined these need to be better explained/clarified. Now we've (PAs) requested a meeting to (1) have our questions answered and (2) explore the group's expectations of us. Think doing this up-front before we are too far along will give all of us a better collaborative experience and achieve the desired outcome. And I realize, some project leaders don't know, what they don't know. With appreciative inquiry, we can assist them to acquire the tools, skills.

So very great to be able to have these "PAN" discussions.

Thanks, Denyse

[A Former User]

One of the dilemmas that I've faced when invited to join a less-than-eager body as a patient advisor is how to make a useful contribution. It seems wise to go slow to learn a bit about the experiences and expectations around the table of professionals. It's useful to see how the group handles new ideas and differences of opinion among themselves before tossing in something radical from the alien land of patients and families.

I've come to see that if we are too hot out of the chocks to make it clear that we expect respectful equality as patient advisors, we can inadvertently set back the movement with a big defensive reflex. Boom! Everything is frozen. Sell out? Or careful strategy?

Sometimes, I think all I can do is offer a low-threat experience of being in the presence of a patient advisor. Also, high on my priority list to make sure that "We are all patients", that evil canard, is understood as wrong-wrong-wrong. Another one is that I'm somehow "representing" others. Would we expect one nurse to represent the world of nursing?

The best set-up can be a good cop - bad cop team. That's a very good reason to insist one patient advisor is never okay: make it three (at a minimum), so there is a likelihood of at least two present always. One patient advisor can push the envelope a little with new perspectives, while the others do all they can to model how safe and valuable that bright idea is. Good to swap roles from time to time, too.

Not that I always succeed. I can think of three advisory roles that were terrible challenges for me. One was a sham committee suffocated by a senior manager, one involved a subject area about which I knew very little as it turned out, and one had me as the lone patient advisor, the only non-professional pitted against thirty mostly-senior and very competitive professionals.

In each of these cases, I found a fairly graceful way to step away from what I viewed as toxic. But I have to admit that I felt beaten and very discouraged. How could I have done a better job to build a foundation for great patient advisor partnerships?

Have you got some insights into how to ease professionals away from resentment about legislation, regulation and accreditation "making" them involve patients? What did you do?

Suggestions welcomed! Maybe you have some "war stories" to share?

Cheers, Carolyn

[A Former User]

Thanks to all for the helpful responses!

Mary Anne, you hit the nail on the head with, "most importantly I believe it's important to support each other, peer to peer, listening to our collective stories, lending a helping hand, caring and sharing wherever and whenever we can." And that is exactly the space that PAN creates for us.

Annette, I very much hope your contact succeeds with her engagement guide and that PAN stands out as a recommended link.

Denyse, your final paragraph is a great description of why Delia and I recommend at least two patient advisors. Having a person to talk over patient perspectives on an partnership helps everyone gain far more than any one person can accomplish on their own.

I think Denyse's insights deserve prominence in our groupsite. Maybe you would consider expanding this as a blog for the website, something along the lines of "1+1= way more value". It would spell out how working along side another patient advisor has transformed your experience and contribution, right from the start. Just a thought.

Best regards, Carolyn

[A Former User]

Hi all.... yes, this is a great discussion - that gives me hope and fuels my determination to see health care improved. Am benefiting so much from all the perspectives, feelign supported and best of all, keeps me from thinking that I am losing it... lol .

I will do a blog. I think perhaps I also will ask/suggest ,when invited to participate in a project, that 2 PA's are better for the very reasons mentioned in our discussions.

Since last week have been having more caregiving experiences both with primary care, hospital ER and Home Care, as result of my husband's chronic condition. Guess I needed these "new, recent" lessons. It enables me to compare and see why/how they differ and will serve me so very well as examples, stories when involved with more PA engagements.

For starters, the primary care experience was great...saw my husband quickly. Unfortunately, the Rx, didn't do the job, so ER was next stop....a few days later. Was blown away by how quickly we were seen, at triage, registration,and a nurse within 15 minutes. Then, just as swiftly 3 tests were conducted, and an anti-biotic intravenous administration was started. Blown away by how well the staff were coordinated and communicated well with us. Additionally, they set up 2 different appointments to see 2 specialists, gave us hard copy documents that contained all the info we needed to know - who, what, when, where, how. They also set up for Home to call us when we got home to give us an appointment for Monday to continue with treatment. I have to find the Patient Experience Manager at this hospital and tell him/her how well the experience was. We need to encourage this type of service and tell them how good the experience is when carried out almost seamlessly. Nobody missed a beat!! Out in 3 hours!! A huge, huge, huge difference to our experience 2 years ago at a different hospital, but one within our LHIN..that made me vow to never return. Then I saw write-ups in our local paper and we weren't the only ones with bad experiences at this hospital. Now if we can just get all hospital ER's functioning so well coordinated, with great communications.

Home Care has improved, but there continue to be glitches. Pluses-called very quickly at home, gave us an appointment to go to their clinic about a 20-25 minutes drive. Also said they would send medical supplies/equipment to the house, Monday & we should bring all with us to the appointment at their clinic. Don't know why they sent all meds as it wasn't HomeCare. Later received a call saying the time to expect delivery. On Monday morning received a call confirming the delivery time. Delivery person arrived on time with 2 boxes - 1 with a pump and charger, the other with 7 individual anti-biotic packages that needed to be refrigerated.

Minuses - no other instructions, didn't know whether to bring all 7 refrigerated packages or just 1. Called the telephone numbers provided (3 different ones) to see how many of the 7 to bring, but got transferred to VM at all 3 numbers. Was told I could leave a message but we were getting close to leaving the house for the appointment. Made an executive decision and packed the 7 packages in ice in box we had received. This coordinating, lack of instructions, and lack of a human voice to help,needs work.

And the conversations continue............. :))

Denyse

[A Former User]

HI Annette

I am curious, you said that Delia Cooper has at least 2 patients on every project. Are these always the same 2 patients or a small group she chooses from ? When we use the same patients all the time we are losing the fresh set of eyes - another patient perspective.

[A Former User]

Hi Virginia,
What Delia refers to is based on being a patient advisor here in BC with the Patient Voices Network (PVN), comprising over 500 patient and carer volunteers across the province. Here are two links:

https://bcpsqc.ca/about-the-council/patient-voices-network/

https://patientvoicesbc.ca/

This program is funded by the BC government and aims to facilitate matching patient volunteers with providers to increase collaboration in safety and quality improvement. They use a standardized approach to preparation and support for each side of the partnership. That helps ensure that expectations are clear on both sides.

Patient volunteers have access to invitations from across the province in a weekly email notification and can then decide if they are qualified and interested in participating. Selection is usually up to the provider. So each engagement is a unique matching of patient/carers and providers.

The accumulated experience since the program began in 2010 has shown for many patient volunteers, being the only non-professional at the table can be very challenging. Another lay person can offer greater comfort and confidence. I've certainly found that to be the case.

So the practice has been for PVN to recommend two or more patient volunteers. Some of us have suggested three should be the minimum for longer term engagements, since not everyone can be available each time, but it is still important to have two present always.

Questions?

Regards, Carolyn

[A Former User]

I'm with Carolyn and Delia - a pair and a spare is what I suggest for patients on projects, unless they want more of course.

Definitely not the 'same old' people, though now that I have achieved that status, I am pleased. I think we want to 'go forth and multiply' at PAN, and help others to get involved as patient advisors.

One thing that stands out in my pathway to getting involved was how hard it was to find the first rung of the ladder and get started. Lately I was thanking someone who helped me years ago, and in her memory what she did was barely remembered, it seemed so small to her.

She saw me at a conference and mentioned another conference I could attend that was coming up. I was so encouraged that she believed in me enough to offer another step to take.

Delia made such an impression on the researcher I was talking to that she quotes her, probably often.. It's great to hear researchers quoting good patient advice.

Annette

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@Annette-McKinnon sample.pdf