How Patient Engagement Can Go Wrong.... what are your experiences?

[A Former User]

First thing, (my advice) don't take it personally. There is a huge need for Patient/Family Advisors and your knowledge, communication skills and life experiences are all very much needed.

I don't know that white males are any more valued than females - I don't believe there is a lot of reverse discrimination but some opportunities might be flagged for a particular type of candidate - and that is appropriate unless it is a misinformed filter.

If you are new to being an advisor be prepared for a very stimulating and diverse set of challenges as you enjoy your role in the multitude of committees, studies and groups you will participate in. It is truly a growth experience - you are not merely giving. Perhaps you feel some mild insult from being refused your gift - it is not my place to judge here and I am not.

For me, a white, middle-class male with no profound family history of health-related issues (just a myriad of personal challenges) I try very hard when in committee or consultation to open my mind to the diverse and complex needs of the community at large - but I know I cannot succeed in considering all of them. That is why diversity is really needed and, sitting in PFA meetings, it is apparent that Healthcare institutions need to do a better job of recruiting more persons of.....you name it.

While I personally derive strong satisfaction from the role I play in the room and am proud of what I have contributed I constantly need to remind myself. It ain't about me.

Colin. If you disagree or want to comment further please feel free.

[A Former User]

Thanks Alies. Where to start eh? I believe, honestly, that, by and large, the institutions are slowly waking to the idea of the real value of Patient Advisors. It is going to be a long struggle and we are nowhere near the finish line - but there is a new sheriff in town and it's called 'system re-design'. The institutions are (often) seeing us a powerful and creative resource instead of a commenter or token partner. There are many crises on the horizon and they need our help.

My experiences in committee are often frustrating. I hear good sentiments and strong ideas but the whole structure of the system - healthcare centers competing against each other for resources in a zero sum environment can only foster lack of co-operation. The leaders know what must happen but they 'can't get there from here' to paraphrase an old trope. It is an monolith that resists course change. So it's frustrating to watch as inertia stifles needed change. I'm pessimistic that this government will display any enlightened thinking regarding positive change. It appears to be solely focused on -$ without a creative consideration of how improvements could accompany cost savings (with a little investment up front).

We've talked about the essential need for the institutions to regard us as partners and we have yet to see that happen in any meaningful way. Until we are looped into the entire process from consult/discussion to reviewing and contributing to the documents and processes that flow from same we are pretty much second class participants.

I don't know about other PAs experiences but I know with a surety that my thoughts and insights almost always shape conversation and decision-making. That is a very powerful resource that we provide, for free - and that is what we signed up for. But I think we also believe that a rationally designed system would regard us as peers - not as merely storytellers or vote-givers. We are in the room now....

Colin

[A Former User]

Hi Everyone!

This is a topic very close to my heart. I'm happy to say that CIHR has produced a draft document on ethics of engagement - it will be available on their website and open for comments soon. They gave me at the SPOR conference last week but I can't figure out how to post an image here that is not from a URL. Email me at donna4walls@gmail.com. And maybe someone else can figure out how to post my image - all the details for the public consultation are on the card including website. Consultation begins on November 26.

Donna

[A Former User]

Hi Donna

I have searched in the past for a place to put pictures and there is one under Photo Galleries. I have posted some health cartoons there and a number of different versions of the classic Ladder of Engagement that I thought were significant.

If you can't add your picture about the very significant there about ethics in POR research I can give it a try. The people at the booth at the SPPOR Summit were very enthusiastic about us sharing this information with other patients.

I heard a story today about a project that was more patient oriented than most and it took them a year to get ethics approval.

Have you all been filling out the survey about conferences for each one you attend? I am behind by one. So far we have more than 50 so please help us get the number up.

Here's the link

bit.ly/2oDgC2U

Annette

[A Former User]

Hi Annette, Thanks! I filled out the questionnaire about conferences for AACPDM and for SPOR. I couldn't find 'create a photo file' clickable link on the photo file page, so I'm not going to worry about it.

All the best,

Donna

[A Former User]

Thanks Annette. I didn’t know about the conference reporting site. Will do.

[A Former User]

There seems to be confusion between the “patient advocate” role and the “patient advisor” role here. Not synonymous. This advocate role seems like it would be a paid position within the healthcare system. As such, there are very clear contractual obligations including confidentiality. However, Patient Advisors would not be in a position to access or share that kind of confidential patient information. We work for all patients at the issues and ideas and policy level - not at the individual advocacy level.

[A Former User]

Good idea to list the less than “engaging” experiences Allies. Know that our Steering Committee for a Patient Engagement Framework at CCO is collecting this data via survey from a variety of engagers and engages right now. I know PAN is on CCOs external consultation list

[A Former User]

Kathy, there continues to be a lot of confusion between advisors and advocate. To compound that confusion, the healthcare world sometimes takes over those terms for paid staff.

For me, advisors - specifically patient and family advisors - are those who have experienced the health system as a recipient of care or helping someone who is receiving care. Patient advocates are often patients for whom a particular cause is something they are passionate about, lobby for, and sometimes raise funds for.

I have seen professional Patient Advocates who have a variety of roles including navigation and dealing with complaints. (It would be helpful if they were called "Complaints Officers" and/or "Patient Navigators"). I have heard of former nurses who go into business as patient navigators and may call themselves Patient Advisors and do work for individuals.

[A Former User]

Hi Alies,

Totally agree. Advisors are “consultants” who use their experience to assist decision makers. Advocates are later focused on a single cause and use their power/position to lobby decision-makers to adopt their agenda.

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[A Former User]

Spot on Colin. And we need both advocates and advisors. And, often, we wear both hats.

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[A Former User]

Colin, you're experience and assessment mirrors my own. It is because of the perceptions of the HC community that we stick with the term advisor.

Having said that, advocates do complimentary and very good work. They are not in any way a dirty word in my books though, as you say, some in the HC community view them as such.

Perhaps the approach of some advocates is more confrontational in non-productive ways. I've found that a lot of people in HC can agree with something we raise or that is raised by advocates but have no power to make change. I image they are frustrated with hearing from advocates about issues they know need to be changed but are powerless to do anything. Bad spot. A little like the "caught in the middle" spot of middle managers who have responsibility but no authority. Been there and it is stressful and disenheartening.

[A Former User]

Hi Colin and Kathy,

Ah, the controversy over "advocate". There was a time when the volunteers in the BC Patient Voices Network were literally banned from using the word!

Many of us thought this was rather odd, in that on the one hand we faced health professionals who were quick to say paternalistically, "We are all patients" and on the other hand, were anxious to enlist our patient perspective, which presumably they could not fulfill themselves.

I now teach (as a volunteer) a variety of healthcare professionals, with the greater part of my time devoted to medical students at the University of British Columbia. The curriculum embraces competency using the CanMEDS framework. Note in particular the role of physicians as health advocate.

This role of health advocate requires the physician:

"to support patients in navigating the health care system and to advocate with them to access appropriate resources in a timely manner. Physicians seek to improve the quality of both their clinical practice and associated organizations by addressing the health needs of the patients, communities, or populations they serve. Physicians promote healthy communities and populations by influencing the system (or by supporting others who influence the system), both within and outside of their work environments. Advocacy requires action.

So that is pretty clear about what "advocacy" means for physicians in professional practice.

I'd like to think we as patient volunteers, who choose to work in collaboration with health professionals, also practice a collaborative and parallel version of this same role for the collective of patients and caregivers. This applies whether we are involved with improving care quality, services design, policy and governance, training the next generation of professionals, research for greater impact on patient lives and more.

In spite of what I might do to dodge this divisive word, "advocate", this is an honourable and heroic part of what we do as patient advisors.

Thank you for your participation on this topic. Yes, we are all in this together!! A big element is cultural transformation. The healthcare professionals know this at least as well as we do as patients and caregivers. The only way to succeed is to proceed together.

Best wishes, Carolyn

[A Former User]

I've noticed lately in committees at HCs that 'advocate'(n.) is a dirty word. I think the sentiment is that advocates don't open the conversation to solution-finding but rather are pursuing responsive action to their cause. (I could be wrong in that assessment). Advisors, on the other hand, seem to be regarded as partners in solution-finding. Maybe not equal partners. Yet.