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

On Twitter the other day, I chanced on Isobel Jourdan's Tweet and blog post and it struck a cord -- not only with me but also a bunch of others on Twitter. It got me to thinking about these experiences:

How do we identify a potentially not good experience and avoid it before engaging?
How do we deal with it once we are in up to our necks?

Take a long at her short and well written blog post: https://modelingchange.blogspot.ca/2018/02/patient-engagement-youre-doing-it-wrong.html

and let me know what you think? Should we compile a list of bad experiences and develop techniques to deal with them? Thoughts? Alies

Hi

I also seen the post. I was going to chime in but withheld. I feel more comfortable sharing here, I don't want the good organizers to think I may be talking about them.

Claude, I have not been exposed to your situation but I know a patient advisor who was completely muted out of a phone teleconference for a short period of time.

My Not so good patient engagement is not having my emails responded to. Recently my contact with a working group did not respond to an email. I have only emailed him that one time so I do not take up his time. Another time a good friend, a physician( specialist). connected me to a colleague of his who agreed to assist me as I moved in to this role as a patient advisor. I emailed her and she too did not respond ( first time I ever emailed her). I sent email again and cc'd my friend, she promptly responded. I again emailed her about 4 weeks later and she did not respond. Things happen so I emailed her again, no response. I figure if I cc'd it to my friend she will respond but I will not do that. Let me point out I only ever emailed her these times, I make a conscious effort to not take advantage of people kindness. If people can not answer your questions they can at least say that.

My other issue is now as a patient when my name is on things I am the only one with out their credentials. They all know I am in healthcare. The only one ever asked my credentials is a patient doing a story on me.

I haven't been at this long and see the issues. Maybe having things here will keep us motivated to do what we do. We all do this for a reason, all where touched by something that motivates us to speak up.

Apologize for being long winded

Virginia

I am not ready to share my recent experience that left me feeling disheartened, questioning myself on why I did not see this coming. Patient engagement in its present form for many patients does not come close to what the model of patient engagement was designed to represent - a partnership. Right now I am dwelling on what structures need to be in place that better protect the patient. Even reading your experience today helps me to not feel so alone in my disappointment - being used for the researchers gain. Thank you for sharing as it helps others who feel alone in the betrayal. Researchers make proposals that include their demands and compensation. If the contractual expectations are not followed from a patient perspective what options do we have? Maybe we need to draw up a contract that somehow protects us?? What recourse do we have as patients if we work on trust when our expectations are not met?

I saw the tweet and was impressed by the way it shared, in detail, what our experiences have been (and in some cases, still are). It would be a good exercise for us to do but as a strategy? It's not something I would do on a regular basis.

here is mine: When attending a Board Committee meeting, ask the Patient/Caregiver to leave the room while they discuss sensitive corporate details and are asked to provide comments upon their return.

Agree ... my experience is the same - more a token than "partner". It is sad that we are ready, willing and able to work at improvement but are so little respected.

My Analysis as to WHY:

Health Quality Ontario have invested citizens' tax payer dollars, time, human resources to develop both an overall "Framework" to guide health researchers in planning for, implementing and evaluating patient engagement activities as well as having developed "Best Practice Check Lists researchers to USE to work with Patients/Patient Family Advisors (PFA's).

Having read these, my understanding and my "expectations" are that the HQO Framework and Guideline Checklists have been developed to be both acquired and used, i.e. researchers need training and to be given feedback on their skill proficiency with PFA's. Otherwise, why have HQO developed them ? Do we know what training, researchers receive in how to work with PFA's?

As importantly, the HQO tools are also the checklists for PFA's that I have been using to compare my lived experiences with the researchers' practice/application of the guidelines for projects which I have uindertaken. Continuous Quality Improvement can ONLY happen with feedback to participant stakeholders on what is working well AND what needs to be improved - How else does anyone improve on anything, if not from feedback. My impression is that HQO put their guidelines out there as just a suggestion. We (PFA's/Researchers) must learn, share and follow some criteria, guidelines, otherwise no objective measurement possible, just subjective feelings.

I do not know how HQO monitor the proficiency/skill acquisition/competencies of researchers in use of the Framework or, Best Practice Guidelines for Patient Engagement Framework. As a PFA, I have not been asked for my feedback on either the (researchers') Planning, Implementation, Facilitation, Use of plain language (written/spoken) and Follow-up skills. Yes, there is "sometimes" a survey, evaluation but it has nothing to do with "performance" as per Guidleines, Best Practices.

While I have been invited to join in research, I have had no request for input, suggestions at the outset, before a project is undertaken nor, along the way on what, if anything needs to be changed/improved from my PFA perspective as per the HQO Framework, Guidelines, Best Practices. How else can we know and develop trust that we are truly partners, not just a checked box? If it is not this HQO Framework and Guidelines, Best Practices, that sets the standard, for working together, WHAT IS ? How else is "performance" evaluated?

I am pleased to offer help to improve the SYSTEM as I, along with many other PFA's have endured the "health system problems" with navigation, silos, wait times, poor communication, with the current arrangement/structures for MANY years. However, I am tired of it now. Researchers must become much more trained/skilled/ and PROVIDED feedback on how they engage PFA's at each stage, if PFA's are to remain motivated to stay involved. It is not yet, PATIENTS FIRST, but still VERY MUCH, SYSTEM FIRST.

We should all be PROVIDED by researchers who/what our PFA anchor is, whether HQO or, other body and what the guidelines, best practices the researchers will be employing with us. Then, we interview researchers as per the criteria before accepting future projects.

Best to all,

Denyse

This gives me some interesting thoughts Denyse.

When I attend PFAC/Community Advisory Council meetings they ask for feedback at the end of each meeting using clickers. They usually get 100% agreement because the questions they ask invite those responses. And now that I think about it they might not even be recording those answers. I'll ask them for the trend lines on that. : )

Every year they put out a feedback form too, but no sign they are acting on this.

Yes, and everything hospitals do is evaluated and scored - but how do they evaluate the PFACs and compare them across the province?

If we did this might we end up with OHA vs HQO? They're mandated to have this, but how accountable are they?

And I realize that Accreditation Canada is strong on Patient Engagement, but I have heard from2 very reliable sources that the staff are pretty well rehearsed for Accred.

Some things I am thinking about

Annette

Very good points Annette. Experiences with those in the system show they are committed to their perspectives and agenda(s) without providing clarity and being accountable to PFA's who, I add, work for free along with all citizens who pay for the health system.

The system planners, organizers, "operationalizers" still don't get it. They are doing the same things in the same ways. Unfortunately, the same old, same old, results will prevail - an ineffective, costly and unsustainable health system.

If PFA's are to be truly engaged partners and trust in our leaders' and partners' stated intents, Patients FIRST, we must see it in action and we must speak up. We must be at the "tables" together, from the outset, with the health system planners, organizers, implementers. Collaboration,partnership means all stakeholders working together to first, design the processes of "how we will work together" - with mutually shared information/knowledge of the processes we will use - then, together we co-design, co-plan, co-create, co-evaluate, co-implement, co-monitor for quality care, cost effectiveness, and sustainability of the system. As importantly, we need to provide and receive feedback to each other on each step, otherwise how do we measure our progress, how we will know if we are on track to meet our goals. But to do that we need both criteria for working together and feedback; most importantly, re feedback, we need the "how to" skills of providing it.

But again, we must have shared, mutually understood processes, which if they exist are not clear to me and other PFA's to whom I've spoken. And, we certainly do not have a shared mechanism/process for useful feedback that would give us the knowledge of what our strengths/skills are and where we need to improve.

I thought Health Quality Ontario's framework, guidelines and best practices they developed and promoted for use were the standards that enabled us to work together, productively.

If not, again, I ask, what is/where are the framework, guidelines, best practices researchers' are employing to work with PFA's? Shouldn't this be common knowledge and shared amongst all stakeholders? If not, we are all wasting time, more money and causing increased pain and frustration among health system users and their caregivers.

Time for clarification, before continuing. If we have no standards, criteria, we cannot measure progress, then, we cannot manage progress and finally we'll descend into the outcome of the Tower of Babel (where no one understood anyone else).

Thanks again, Annette. I look forward to what else you learn as well as other PAN members.

Pointing out the issues in public is certainly not a strategy, but some of those it was aimed at responded enthusiastically. I got a tweet from another patient though sort of calling me out:

"You may be right. I personally feel good #PatientEngagement happens when we talk about and show researchers/HCPs the way we feel it should be done rather than talk about how it shouldn't be done. Focusing on getting it right ensures you don't have 2 talk about getting it wrong."

I was tempted to respond that it is so good to have our own forum to discuss these issues on PAN but I did not want people to imagine us in our group site being critical and biting, so left PAN out of it.

The trouble with talking about the way it should be done is that it sounds so obvious and high minded, and 'of course we all do that', and often these failures in the details are done by people who are trying to do engagement right but have fallen in the execution.

Maybe their power and privilege in the system is just not obvious to them?

I just want to register my resonance with Lorraine's experience.

We work in quite isolated circumstances, for the most part. Retaining self-respect and strength to advocate in adversity is daunting. Good on you, Lorraine for reflecting on the fundamental basis of our work being "trust".

Betrayal of that trust is more cutting than most anything we can experience. So our strategy must be two-fold: (1) invest our emotions prudently (cautiously); and (2) moderate our expectations so that very modest results are better than anticipated.

Okay, I hate this, too. And please know, I've been harmed by partnership failures that dumped on me. But we are in this for the long haul; we are pioneers and must expect adversity; we will see our successes in the generations who follow us.

So good on you Lorraine for keeping close to your values and having the courage to continue. We need to stand together as best we can, to achieve what we know is possible.

Warm regards, Carolyn

I appreciate the thought provoking insight and experiences that we share through PAN. It is our collective experiences shared that I believe may help us as Patient Partners to fine tune an approach to improving the process. Yes there are "ladder of engagement", check lists etc. that are not implemented as the authors intended. Maybe we need to look at the CHIR application process for making changes. Currently we are often provided with information on the proposal without much opportunity for input, often informed by researchers that the timelines are so short to adequately implement the guiding principles of inclusiveness, support, mutual respect and co-building. Meaningful and active collaboration in governance, priority setting, conducting research and/or knowledge translation isn't always happening as I expected. However, I want to say that I have had the joy of working with a team that has embraced all of the above and I feel that my input has truly complemented the research. It is not happening often enough and is more the exception than the rule.

With the CIHR application process, proposals are approved and research funded and completed but there is no guarantee that the process is honoured in terms of patient involvement once the research begins/ends. Researchers must, I believe update CIHR and reach certain targets for research financing to continue?? Patients are not a part of this process with CIHR - they only seek input from the researchers. Just a thought!!

All, what a great thread with some many ideas! Some that caught my mind:

a) Accountability -- the need to evaluate patient engagement. If it is deemed to be important, then it should be measured and remediated or rewarded. Along with this is the notion that advisors should be at the highest decision-making levels like boards.

On that note, we have just posted a Conference Evaluation survey on the PAN website so that we can evaluate the conferences we attend from our perspective. The resulting report will hopefully provide a good guide on how best to include patients and caregivers. Perhaps we should expand the notion of evaluation to other aspects of engagement. Thoughts?

b) Advisor skills -- we all can benefit from improving our understanding of our roles and how to perform them. We have a Training Sub-Committee that is building the first training for advisors and will be looking to develop a list of what we all think we need.

c) Research -- this is fraught. CIHR has made patient engagement mandatory but not significantly (if at all) adjusted its funding practices to support this. I'm not even sure it understands that this is necessary. I'm deeply involved in research projects, research funding bodies, SPOR and so on and there is barely any understanding that patient partners need significant training well beyond the joint training offered as patient oriented research primarily targeted to the researchers.

I, too, have had unfortunate experiences in the research world including breaches of contract involving money, the taking of my name (and reputation) without consultation or permission and so on.

In sum, we can and are doing something about the skills training and will need ideas and help from us all on this. And WE need to define what we think patient engagement 2.0 should look like. We know from the Twitter thread what it should not look like, now we need to flip it.

I too have had experiences where there was little or no follow up. I guess my position is that the colleagues who use my stories or examples must do the work to fix the problems and that takes a lot longer than we, as patients, expect. They need support from the Executive and the Board. That is why it is so important to have connections on the Boards and at high level decision making committees and not simply "one-off" engagements. Yes it takes more of your time but it is valuable feedback and important in the long run. Having absolutely no feedback is unforgiveable.

Thank you for sharing this article ..........Ally Ladak

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

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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