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

You're welcome! Interestingly, there has been a lot of action on Twitter under the hashtag #HowNotToDoPatientEngagement. There seems to be an element of frustration among many with the rate of change and healthcare's understanding of engagement. So lot's to do.

Yes I agree with the update shared by Alies Maybee -March 12/2018

Just a quick update from my perspective on how the patient voice is making inroads at CIHR to reinforce authenticity in patient involvement in research projects.

The bad news is that projects with unimpressive patient engagement are still getting SPOR funding. Perhaps this is because their irresistible promise for a big impact on health in Canada. The good news is that the patients who serve as panel members for awarding funding are awesome advocates for genuine patient partnership on research teams from start (problem selection) to finish (knowledge translation for implementation).

As I see it, the big change happens on the inside of the deliberation process as education for other panel members. Patient panelists are raising awareness and sensitivity to what patient engagement in research actually means for leading researchers, policy people, methodologists, health economists, clinical specialists.

In my experience (3 panels), I've found the health professionals very open to learning, but quite clueless to begin with. For the most part, they eagerly learn to recognize the difference between talk and actually collaborative partnership. I think they welcome this as a new criteria for evaluating research proposals.

However, what is needed is what the discussion above suggests. Annette I think raised it first: evaluation of research though the project life cycle for how well the promise for patient partnership is actually being fulfilled.

The BMJ (British Medical Journal) began a gesture in this direction a number of years ago with a requirement that manuscripts submitted for publication must document patient involvement in the research project that generated the results that are being reported. No teeth, but a reminder for researchers and readers. Here's that link.

I would expect that there are performance criteria in the future for our SPOR-funded grants. We can help make that happen. I'll certainly take that message to CIHR, the provincial SPOR SUPPORT units, and other policy people I encounter in my activities.

Accountability on research conduct is just one part of raising the bar for better partnerships in research. Helping the research establishment and granting infrastructure learn from us about our experiences on research teams is incredibly powerful. Everyone's voice counts.

Onward and upward! Thanks for this discussion.

Carolyn

Hi Alies,

The advocate was hired privately, so not a in a healthcare job or system. Her job was to primarily assist as a care and case manager, and to attend appointments and medical procedures with the patient.

The breach happened when the advocate emailed the patient a summary of their discussion of the patient's medical conditions and a recent visit to a doctor they had attended together. The email got sent to another patient/client of the advocate's as well as the correct patient/client.

I am not sure how confidentiality is regulated by the various patient advocate certification boards. Looking over the websites for these boards, I see that confidentiality of patient information, including conversations and records, is part of the certification boards' ethical standards.

But it is not clear how is this actually enforced or regulated. Is there some process for accountability that patients and families can look to when there is a problem, such as with confidentiality or other breach?

...Susan

Susan, this patient advocate sounds like someone with a formal healthcare role/job. (Confusing title) if so, then this is a breach of confidentiality and there are probably processes to deal with it. I can't imagine how a patient advisor (usually an unpaid volunteer) would have access to this info. Am I right about this?

Alies

Sent via Groupsite Mobile.

Well, it seems to me that the client-patient whose privacy was violated, or their family member AND the client-patient who received the confidential information by error BOTH have grounds to file a complaint.

In their contractual arrangement with the patient advocate, there must be some sort of coverage about confidentiality. So at minimum this is breach of contract. If the patient advocate is licensed or certified in some manner, then the patient-client or family member should go to that regulatory body right away with a complaint. This is a huge matter of credibility for this new line of work, so they would have a big stake in maintaining a high standard for their clients, if they want to succeed.

If none of this is so (i.e., no contract clause on information handling and no regulator), then if it were me, I'd go to GoPublic at the CBC and have their journalists use this one case to illustrate the Wild West environment of this emerging health service to raise public awareness of the risks. This could be the catalyst to getting the service self-regulated with accountability and penalties for violation.

Make sense? Good issue to raise! As I age, I will likely need such a service if I develop cognitive or other disabilities that prevent me from being my own advocate and navigator. And I'd sure want to know that my health information was in the hands of someone who took accountability seriously.

Thanks for the exchange.
Cheers, Carolyn

I have been informed by a health care patient/client about an upsetting experience with a patient advocate. The advocate sent the patient a file with the patient's confidential health information. The email, supposedly through a secure server, was addressed by the advocate not only to the patient, but also to one of the advocate's other patient clients by mistake.

What do you recommend for this patient/client about this distressing confidentiality breach? For example, should it be reported to the advocate's certification board for review?

How are health care advocates insuring that such breaches can't happen, in this case, by accident? It is one thing in a centralized EHR system, but what about privately engaged advocates?

Susan

Hi Carolyn,

The contract between this client and advocate assures confidentiality and that information cannot be shared with a third party without consent. Involvement of the certification board is not mentioned in the contract. Any disputes go to binding arbitration. There is no recourse or review or protection offered by the certification board.

The certification board reported that they have not developed a complaint or disciplinary process yet, saying they are 'too new', only offering certification for a year now. There is no mention of filing complaints on their website.

It seems to me that in order to keep the reputation of this work, or of any profession, clean, certification must include a means of accountability. For example, a publicly accessible means of filing complaints and for certification board involvement with disciplinary action on its certificate holders. Look at the College of Physicians and Surgeons for ideas about how to do this.

Right now, this advocate seems to only be accountable to legal binding arbitration as a contractual violation and not to her profession.

That does not insure ethical conduct or protect clients. It means an expensive arbitration process for the client if they have a complaint.

I guess I thought the certification boards would be responsible for accountability of their certified members; but what I understand you saying is that they won't do that unless the government forces the industry to regulate its own members.

Are you developing ways to include accountability of practitioners during and after training and certification?

Hadn't thought about this before!

...Susan

Hi Susan, Makes me wonder what "certification" means, if not accountability!

I were a customer, I'd want the public to know about exposure. Clientele would be people feeling vulnerable who are seeking help with some urgency, I would think. It's all about trust. Easy to assume "certified" = trustworthy. Not so much, it seems.

Shining a bright light, as the CBC GoPublic team can, would likely have an efficacious effect.

I guess my PAN interest here is for our members to become aware of this emerging healthcare role and its current limitations. Just when a person wishes to feel safer, exposure to harm may actually be more likely than expected.

Maybe this certifying body needs to engage some patients and family carers to learn "what matters to me".

Best wishes, Carolyn

Hi Carolyn,

My sentiments exactly. People ask for a patient advocate because they are feeling vulnerable. A perfect place for a less-than-ethical person or someone who is not very conscientious about their work to step in. Especially with professional-sounding credentials that may not require any accountability.

I brought this issue to the PAN group since you are working on creating best practices in real time.

Chaplains are always contending with people who can simply call themselves a chaplain, or have purchased a certificate of ordination by Internet, or taken a non-accredited class in spirituality.

Our professional organizations are always trying to educate facilities about the importance of hiring Chaplains from an accredited training and credentialing program.

Thank You for your input, it has helped a lot with understanding what happened and why.

Wishing you all Success,

...Susan

Hi Susan,

Let me just correct one thing: “you are working on creating best practices in real time“ isn’t quite right.

WE are working on creating best practices in real time.

The wonder of PAN is that we can collaborate to locate wisdom, turn that into something teachable and then spread the understanding far and wide through our own networks with each other. health professionals and the public at large.

Thank you for your initiative and reflective thought. This is what PAN is all about.

Cheers,
Carolyn

Hello Kati;

First, a warm welcome to you from another PAN member. I can shed some light from my own "personal perspective", and say I have had similar experiences a few times- "rejection". And yes, it is frustrating and hurts. What I have learned & recognized about engagements is "engaging patients/caregivers i.e. patient advisors is A BRAND NEW approach to making improvements begun by the health system. We, as patients/caregivers are "pioneers" in this BRAND NEW movement. WE are making new tracks in the snow, blazing new trails and it is far from perfect, YET! :)))

The decision to engage patients/caregivers is a good one. This was required to really understand the many gaps and barriers, in our siloed health system. Only patient advisors experience the barriers, gaps, miscommunications, misunderstandings frustrations, etc.. across the entire system. And we have valuable improvement ideas. However, the engagement process, and criteria are determined by the "POWERS" that be, NOT patients/caregivers. Also funding for research is limited.

I understand the health system is trying to address issues that impact all of us, a diverse population. We are a multi-cultural society and as such "the health system" is looking to compose as best they can, a diverse team of people representing as many cultures possible to understand as many perspectives so improvements meet our society's needs.

And of course it is a HUGE health system with multi components and it is hard to get a handle on - the why, where, who, how things work as they do, why change is so slow, who is accountable for what, how do/can I make a difference and how quickly as I've been voicing concerns for years (18). However, no one individual, alone, can make an impact and, not always are we able to work on our passion. But there are many calls for engagements. And I am glad you shared your story with PAN.

Through PAN I have found like-minded kindred spirits from all walks of life with all kinds of health issues, passions who generously share their knowledge, skills and ideas. They educate me, share my frustrations, offer compassion, consolation and keep me motivated when at times, I want to give up. It is hard not be discouraged, sometimes hard to measure our individual progress, but together we can and are making a difference. Through our engagement work with researchers we develop the confidence to provide constructive feedback and share outcomes. From each experience we have the opportunity to assist researchers in how to engage us more effectively. For them too, this is a BRAND NEW approach.

You, your voice, your experiences matter. I hope you will find the motivation to keep pursuing your passion; I can assure you there are many engagement opportunities out there.

I am happy you chose to share your experience with PAN and I know you can benefit and bring value to one of these opportunities.

Kindest regards, Denyse

Hi Kati,

Welcome to the PAN! I think most of us have the experience of being screened out of a study that will eventually serve a patient population with better care.

The fact is that many patient advisors are middle aged, retired, well educated, dominant culture, middle class, white women. Although we are abundant in the general population, these characteristics may be less typical of patient populations. Also a project leader will wish to recruit patient advisors who reflect the widest possible diversity concentrated in just a few people. They may "over-sample" for greater demographic diversity in advisors to make sure their project is fully inclusive of differences that might not be apparent otherwise.

I've wondered why people who look like me are the most common among patient advisors. I think it has to do with the built-in organizational "screens" that select for privileged people, especially women who may be more inclined to volunteer to help others. We also have great advantages for participating (electronic connectivity, office experience, self-confidence, daytime availability) in these advisory roles and greater likelihood in being free of barriers that others might face (jobs, kids, rural/remote, mobility restrictions).

I think we can be better patient advisors by learning about the barriers that others face and proposing different ways of accessing their lived experience and insights in projects. That might mean redesigning patient advice and input by taking the project to where people are, rather than always expecting the patient advisor to arrive where the healthcare professionals are. I try to make a practice of asking, "How would this project serve....?" about people have needs that are not in the room.

All this is to say, don't be too discouraged. And please feel free to express your concern about discrimination to the interviewer. Ask them why they ask these questions and how you can participate in the project even if you are white, middle aged, etc. Those dominant characteristics are also over represented among healthcare professionals and researchers!

I hope this is helpful. The main thing I'd recommend is to continue to seek collaborative experiences. You might find that taking on an engagement that is something new will help you learn about other healthcare areas, too.

Best regards, Carolyn

hello Carolyn and Denyse

thank you so much for your thoughtful answer. I accept that the marginalized groups need better respresentation, and then there is a need for multicultural and indigenous representation.

The community i belong to is in majority of middle age women. Patients living with myalgic encephalomyelitis (ME) and fibromyalgia (FM) have been at the bottom of the priority list for decades. While middle age women are most likely to have these diseases, men and children can get both too. 75% of us is unable to work and 25% are housebound and bedbound. A majority of us have gotten sick from a viral infection amd never recovered. Less than 5% of us recover. His is a lifelong disease.

The Canadian health minister still refuse to recognize the ME and FM Awareness day. There is no medical specialty addressing thiese disease despite the knowlege that these diseases are complex, affect more that one organ or system and new PET scan technology have found widespread inflammation in brains of patients living with ME and FM

in the US i qualify for heavy duty drugs which have offered me hope to recover. In Canada, we are for the most part offered group therapy and no more testing than a cbc and maybe rule out rheumatological disease. Despite the promising research findings from the international community, we do not have a large pool of researcher, as most have been told it would be a career suicide to enter this field.

So when i participate in engagements, i represent my patient community that has been marginalized, mistreated and denied competent medical care. Our patients are often denied disability benefits when they are too sick to work, and live below poverty level. With no medical home, very few doctors who see patients with ME and FM, being in the bottom end on the priority list in health care, how can we get heard if we are not offered a seat at the table?

best regards, Kati

Hello everyone, it is one of my first post here I hope I can strike the right note here and that some may relate to what i have experienced.

i have applied for an engagement which was of interest to me. i got a call back from this person who needed to screen the people further. To my dismay, they asked whether i was a man or a woman, my age group and my race.

As far as I understand it, they may want to have a diverse group of people for their activity. However to me, it feel I am likely to be discriminated due to the fact that white middle aged women are largely represented in the pool they are choosing from. If you are a man, if you are indigenous, if you are a visible minority, you are more likelly to be accepted.

So in the end, it sounds like they don’t want another someone like me.

What am I to do?

Hi Kati

Great to see you in Canada, and surprised.

I have a line that always gets a laugh when I talk about why the researchers need to work harder to include the minorities. It's a warning against the Triple W's (wealthy, white women) and the "pale, male and stale" population. The first is obvious to all of us, and in this context wealthy only means comfortable; the second is borrowed from corporate Canada. Of course it's not funny.

I have an idea for you. I'm part of the SPOR Evidence Alliance research project - they have 4 more years to go on a $5 million grant. Could you try to work out a "query" for them, and get some "free" research that might help your cause?

The clear intent of this Alliance is to include patients. The funding is part of the Strategy for Patient Oriented Research. their are 12 patients on the team, and they are going to add patients.

So far the Evidence Alliance is answering 10 queries from large organizations, and have none from patients though it has been a year since they were funded. When I brought that up in the presentation of results from the workgroups at a meeting yesterday, the PI said there had been questions from patents but no queries. I asked about the difference between a question and a query, saying that patients and small groups might not know this, and may need support to phrase their questions in an acceptable way.

They agreed in general, so maybe there is an MECFS issue that could be phrased in a way to trigger a systematic Review or a Rapid Review. Even if you can't they are committed to answering patient questions too, and say they are using a James Lind Alliance type method.

I am on this team, and it is funded so that patient partners receive compensation. They are working on developing relationships with indigenous patient partners as a pressing need, but they still need more of us run of the mill people if you are interested.

Annette

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.

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

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

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

How Patient Engagement Can Go Wrong.... what are your experiences? 14 43 329

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

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