Patient & Family Partners in Research - are these truly the issues and experiences?

[Alies Maybee]

I participated in a study about patient/family partners in research by Providence Health in BC. They have a poster with their findings which I uploaded to Files and am attaching here.

I would like to know your reactions to the information. Does it reflect your experience and understanding of partnering in research? Alies

Patient and Family Partners poster FINAL COPY_Feb 22.pdf

[Alies Maybee]

One observation I can make from anecdotal evidence: Those who have a chronic condition and partner in research on that condition are treated better than those who do not and partner in other forms of health research.

Does anyone else have the same experience? Alies

[Denyse Lynch]

My thoughts: I am a caregiver and lived through the experiences - and consequences with my dad and husband. I think, those with a closer proximity to the "lived chronic conditions" have really in-depth expert evidence to share.

My caregiver experience has been somewhat minimized and I find in order to be heard, but more importantly - listened to, I have found it is important to provide "concrete, specific" observation examples on how the patient with the chronic condition & their caregiver are affected - across the 4 "human dimensions" which comprises our make-up as all, humans, "being" and our quality of life.

1. Physically i.e. level/intensity, duration location of pain, difficulty/ease in performing daily living, working, family, social relationships, activities

2.Mental i.e... how challenged the patient finds living their lives day-to-day and self manages daily living care, activities e.g. husband with leg ulcers could not work full time as concentration was compromised

3. Emotional: i.e. how the condition affects their usual state of happiness - sense of self esteem/worth, guilt, anger, compassion etc.. and for how long do these emotions impact the patient and their family, social, work relationships

4. Spiritual: (not necessarily a belief in God or organized religion) i.e. how their condition affects their level of hope, faith, belief in being able to manage their lives - ability to focus on something MORE than being reduced to, identified as a chronic condition

I make sure that I have observations of examples across the 4 dimensions in my loved ones to share, not only because they are intrinsic to being human, BUT when one or more is out of balance, the patient's whole quality of life is affected along with those that surround them

The health system has done a terrific job in focusing on treating the whole "BODY" parts, but, as we are living longer, presented with diverse challenges, the 3 other dimensions are NOW require attention and focus if we2 are to have a quality, sustainable and cost effective health system. Mind-set shift in perspective has to occur........

Denyse

[Carolyn Canfield]

Hi all,

Thinking about Denyse's four dimension framework for wellness, how can we influence that needed shift in healthcare? I've started to reflect on where the patient perspective can have the largest impact. One opportunity is with the definition of outcome that research studies adopt to catagorize results, both good and bad.

In clinical trials, classic "hard outcomes" include subjects experiencing "death in 90 days" and "readmission to hospital in 30 days", or some variant. So the trial follows research subjects to see if they experience these events (intervention failure), or they don't, (success) after some intervention.

Just avoiding death or readmission might not mean successful recovery to a patient! Wouldn't it make more sense to measure function after the intervention under trial, includeing a return to at least baseline functional abilities before the intervention? This could also include all four of Denyse's dimensions of wellness. How was the patient doing before? How after? Was the intended improvement achieved?

A frequent side effect of general anaesthesia especially for the elderly is post operative delirium. If it never resolves, the person may physically survive but the personality may be so impaired that the family has lost its relative and the patient has lost independence or any sense of themselves. That wouldn't tick the box of surgical failure as death or readmission as a failure, but the unintentional consequences of the intervention failed the patient, without doubt.

What about a person who is traumatized by some aspect of the research experience? Psychological help might well be equivalent to readmission for an unexpected post-intervention complication, could it not?

So that's on defining the negative outcomes. What about the positive? I would suggest it is not all about avoiding disease recurrence or complications. What about the four dimensions from Denyse, once more? Maybe a larger question to ask is how the intervention addresses intended improvement in all four dimensions?

Where I really want to go is asking the patient what their goals are and matching outcome measures to that. After all, what is the purpose of an intervention, except to help a patient improve their wellbeing? That could be preventing recurrence of a disease. But it also might be activity specific in response to the now hackneyed, "What matters to you?".

For example, "I want this surgery on my back so that I am strong enough to cook dinner for my family." Then the outcome includes not only back strength, but cognitive capacity to do sequential tasks safely, balance, motor coordination, good sight and hearing for kitchen safety, and so on. That sort of integrative physical plan for measuring outcome success makes sense as "Patient-Centred" rather than system-centric.

We also know some kinds of surgery impacts mental health. Classically, heart bypass surgery seems to increase the likelihood of post-operative depression. Wouldn't it be useful if all research of interventions were tracking mental health side effects? And the list goes on.

If we make progress in embedding more patient-centred research measures, then maybe that will spread the idea more quickly to understanding system-wide healthcare operations. This larger view of success would certainly be transformative!

How excellent it would be for the every patient's goals in four dimensions to become the care plan's goals? And then to see resources enabled to achieve those goals, seeing them tracked along a dynamic plan that's modified and updated at every turn? What a positive impact that would have on society and often unseen social costs!

Dreaming on and on,
Carolyn

[Denyse Lynch]

Joining your dreaming, Carolyn.... reflecting and of course, continuing to have experiences living, one of the most important competencies I think we all need to acquire is managing the life changes. Seems as we age i.e. :))) mature, have more and more life experiences, of all kinds, nothing in my education taught how to manage big changes - the unforeseen kind, that we don't anticipate or, think will ever happen, or it will happen very far in the future - to us, our loved ones, our friends, our community, our locale/city, province, country, our world.

As we grow up, our life changes, milestones experienced are for many, positive, predictable changes in physical, mental, emotional, spiritual growth. We take it for granted this trajectory will continue. For those where physical barriers, challenges appear early, adjustments, flexibility, adaptations must be made. Perhaps, because of the early appearance of their challenges, over time, people develop a resiliency that grows stronger, assists them in adapting, integrating these challenges into their lives - across their 4 dimensions.

Through living experiences, but most importantly in REFLECTing on them, am I able to REALIZE "wow, didn't see that coming ... could I have prepared, how? Emotionally, certainly NOT. It is not until "it" happens that emotions can & do surface, sometimes like a tornado. Our emotions can cause "pain" as much as they can cause "joy". These exist on a continuum of/in our "being". They definitely impact our perception of "well being" as much as the condition/status of our physical health does. My emotional/mental well-being is essential to perceiving that my life has quality. My body can be in pain yet still my emotions/mind can be well. I know people, as do most of us of all ages who carry awesome physical conditions and do well emotionally, mentally ... they amaze me. They've discovered, chosen and adapted to changes in their bodies. But, if the emotional, mental health is compromised, so too is quality of life.

Medicine, health care's focus has evolved in silos, with specializations specifically on the body. The practice of medicine, health care is still young. Fortunately, we've begun in certain areas of medical specialization to pay attention to and integrate the 4 dimensions of caring for human beings. I think of cancer treatments. Now, we need to scale it high, wide and deep across all the health care elements so it becomes the norm - an integrated approach.

......just thinking,

Denyse

[Denyse Lynch]

Thanks Donna for the 5 F's you shared - I think, yes, absolutely, the way they have been broken down works equally well for "everyone" experiencing an illness and certainly with our aging population of which I am one :))) . Husband too... who has a chronic condition and is currently dealing with some "issues" that have flared up recently.

An illness represents a "variance" in our personal health continuum and the variance can be significant, affecting our abilities re all these: Function, Family, Fun, Fitness and Future.

Will to do some more thinking on these terms. They have given me the idea of perhaps using these as the foundation, a framework for discussions/questions when meeting with either health providers or, on research projects am involved with. Just the beginning of an idea, but maybe for health providers -as a caregiver, I will share/report on where the patient is on these 5 F's scales. Concrete examples of the patient's ability/or lack of them on each of the 5 F's scales can assist at arriving at the "current overall health status" of the patient - gives the provider a bigger picture than just the "silo-ed body" part which specialists are naturally drawn in to. It should help the provider suggest, recommend more options and/or provide them with additional information which will assist with the "best" Rx for the patient. An added benefit I see, is it can assist in the developing of the "partnership, shared responsibility" between patient/caregiver AND health provider.

For research projects, perhaps the questions to ask of the other stakeholders are: "from your perspective how will -X- which we have been discussing impact patients' 5 F's ?" This prompts the stakeholder to really dig deeper into the realm of the patients'/caregivers' perspectives.

I can see the benefits of using these 5 F's will assist all stakeholders to think more comprehensively about the outcomes of research on patients/caregivers.

What it means for patients (as much as they are able-my husband gets brain fog due to pain) and/or caregivers who accompany the patient to appointments is: WE must think in these terms, collect data/examples of the 5 F's and prepare the facts very well for appointments/interventions. Again the benefits are the on-going "relationship development " between the patient/caregiver AND health provider.

Thanks ... the thinking continues.... Denyse

[Donna Thomson]

Hi Everyone,

This is an interesting discussion. I do mostly family engagement in pediatric neuro-disability research. So in our domaine, the patient IS the family (I think in chronic conditions, it's always the family, but that's my bias). It has been a fascinating journey for me to be at the learning/creating stage of how to do engagement in this area. I'm guessing we are not unusual when I say that there are some (mostly in behavioural science) who are keen to engage and try anything. There are others (mostly in basic science) who resent that engagement is now a requirement for funding. That's a generalization, of course, but one that's largely true. There are exceptions, especially in genetics where families of children with rare diseases develop great working relationships with researchers over a period of years. Everyone agrees that the science is improved by child/family engagement in those cases. In fact we are having a conference in November (Brain-Child Partners.ca) with panels of researchers and parents discussing how they negotiated working relationships and how outcomes were affected.

One of the research projects I'm working on is an engagement certification programme for parents and researcher trainees. The course would be online and grads would then mentor new parents and researchers. The project is in early stages of development and we're still looking at partnerships but it has great potential, I think, for making a positive difference in childhood disability research.

Re Denyse's point about domaines, I think this is really helpful. One way that we have broken it down for children and families (and I think this works for aging too - another area I advocate in) is the 'F Words of Disability' - Function, Family, Fun, Fitness and Future https://www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability. Thinking about wellness in all these areas has been helpful for me personally and in my engagement in research.

[Annette McKinnon]

I'm interested in the engagement certification project that you discuss for parents and researcher trainees. It's a good idea to have it online for convenience.

I've managed to enrol in almost all of the real life courses, and some that are online so far, and I am interested in a CV for patients, parents and family. It's a bit irritating to go to conferences that are worth 9.25 credits in maintenance of certificate, or CME or something similar, and have nowhere to record these events. I know I could do it myself but I would like to see some kind of standard.

Does anyone think we should have a list of all of the courses on the PAN groupsite, just for awareness?

Annette

[Denyse Lynch]

Hi Annette, All

I agree it would be invaluable to have a list of all the courses on the PAN groupsite, for awareness.

Seems we are "foraging" about for information, available courses which is time-consuming and also means we don't "necessarily" hit on the right courses/information that we need for being effective PFA's. As we are also in various stages of growth, development as are our research projects, it would assist us to have courses available, housed under one roof.

PAN can definitely assist us in this way.

Others' thoughts/perspectives/benefits/concerns ?

Best, Denyse

[Denyse Lynch]

Alies, am responding to your discussion/question in research by Providence. In reading and reflecting on the attachment you provided, I concur with the findings.

What I've done now that I am in the early stages on a new research project and working with another PA (which I will certainly strongly suggest to future engagement "calls for participation) is "WE" met with the project lead after our first meeting with the whole team and shared our objectives/goals for being engaged (not tokens) and we posed "appreciative inquiry questions" to her about the previous experiences of this team with Patient Engagement - Turned out "none" of them has had previous experience with PA's. The lead said she most certainly wanted our active participation, that we were very valuable and encouraged us. We asked her if there had been any questions or discussions (benefits/concerns) about our role/participation from the team and she said no. But she really wants us on this project and I don't know that she has had a lot of experience with how to get new groups gelling, other than letting time pass.

Now I have an idea for the second meeting that I am requesting (PLEASE) some help from PAN members about: since the lead is a big PA supporter, I want to ask her to add to the beginning/opening of the 2nd meeting, a short round robin Q & A (10 min) with all the team members commenting on a question that will enable us to reflect/articulate on how we can collaborate effectively,productively as equal partners on this project.

It needs to be a question that doesn't threaten participants, rather that they see as a relevant, important question we can answer so our meeting discussions/exchanges can move forward having broken through that "new group awkwardness".

SUGGESTIONS WELCOMED, PLEASE :))) - Denyse

[Virginia McIntyre]

Hi

I am very interested in registering for courses that will assist me as I move forward as a PA. I have taken the Research ethics course and appreciated having it easily accessible. Also,fortunately I was able to attend a patient advisor session on story telling.

If there are any courses any of the PAN members feel would benefit me please share. I have been invited to sit on a conference committee as a patient advisor. Does anyone know of a course that would assist? I also agree to have courses available on this site would save time from researching courses.

Thank you

Virginia

[Alies Maybee]

Virginia, I don't know of any courses for this particular role. I did help plan the Health Quality Ontario conference for 2 years but bowed out this year. I found in this case it was a lot of work - more than I bargained for. Different orgs will do it differently.

My suggestion is for you to validate the purpose of the conference and then focus on choosing topics and abstracts that support the purpose AND that have some patient involvement in the work that they want to talk about.

Another option is to see if there can be a patient on all or at least some key panels discussing topics.

Good luck! It is so important that you provide some perspective from your own point of view. That alone will be different from all the professionals and should help ground everything in the patient experience -- which is the point of all this work in the first place.

[Alies Maybee]

Denyse, I am so glad that one of the dimensions you list is "spiritual". I think this is a great missing piece in healthcare and a substantive element in well being.

[Alies Maybee]

Denyse, about your request for suggestions for the meeting with the researchers: how about asking them about the impact on the patient experience writ large that they envision resulting from their work (ie: why this particular piece of research beyond building careers).

It might be interesting to see what they think the barriers to implementation of their work might be and how they can build greater success in uptake into their research project.

I like the concept of tapping into their deep motives to make the world better -- that sometimes get forgotten in the press of needing to get funding and further a career.

[Carolyn Canfield]

Here are some resources from the UK and US on patient advisors in research. I'm hoping that you find them as interesting and useful as I have.

from the UK

Macmillan Building Research Partnerships – cancer-focussed but brilliantly generalizable

http://learnzone.org.uk/courses/course.php?id=109

National Institute for Health Research

https://drive.google.com/file/d/0B1PlISSsUqWieHFVVEhaaEx6T0U/view

INVOLVE

http://www.invo.org.uk/wp-content/uploads/2017/03/NIHR-Public-Involvement-Leads-National-Meeting-Report-2017.pdf

http://www.invo.org.uk/wp-content/uploads/2016/05/HRA-INVOLVE-updated-statement-2016.pdf

http://www.invo.org.uk/wp-content/uploads/2016/12/INVOLVE_payment_document_v4-NOV16.pdf

from the uk charity, Pathways: health for homeless people, with outstanding content on “expert by experience”

http://www.pathway.org.uk/wp-content/uploads/2013/05/EbE-Involvement-Handbook.pdf

from the USA

PCORI

http://www.annfammed.org/content/15/2/165.full

Here are two useful documents from Sally Crowe, the great UK thinker on co-production, co-design:

Final checklist_for_critical_thinking.docx

[Carolyn Canfield]

Virginia, please ask the organizers to invite more than one patient advisor on the committee!

It helps so very much to have the wisdom of "crowds" to bolster your own contribution and confidence. Best wishes. Let us know how things work out. Questions always welcomed here on the PAN groupsite. I've done my share of this work on conference committees and so have many other PAN members. It isn't often comfortable to ask the hard questions. We'll do all we can to support you. Courage!

Best regards, Carolyn

[Denyse Lynch]

Thanks Alies for your suggestion re questions to ask researchers.

Questions that bring to light personal motives, broadens, deepens, enhances conversations and can be more meaningful for everyone. The value, purpose in group work, is beyond the obvious facts - i.e. what sits on the surface, relatively easy to see, report on. What is below the tip of the ice berg.... the whole picture can really only be accessed by thoughtfully formulating, composing, asking questions, listening to responses and confirming understanding.

Think this enables "group members" to add to, omit from, re-arrange, re-organize their knowledge of individual perspectives and re-assemble for better comprehension of the whole picture.

Thanks, will keep 'you all' posted. Denyse

[Virginia McIntyre]

Alies and Carolyn

I appreciate your suggestions and advice. I like that I have PAN to assist me as I move forward.

Thank you

Virginia

[Carolyn Canfield]

Hey, that's what this network is all about! Your questions provoke my thoughts and new questions, and help me better understand the work I do, as well. PAN is an awesome gathering of talent and wisdom. Never hesitate to ask away! Best wishes, Carolyn

[Alies Maybee]

Denyse, I'm just re-reading this thread and am wondering how it is going with your research group. Alies

[Denyse Lynch]

Thanks Alies... my Steering Committee Group are interesting, committed and we are beginning to develop a collaborative dynamic. This is a challenge as we only meet every second month. Having another PFA on the team definitely makes a world of difference though, both to my focus, motivation and to the whole group. While my colleague & I share similar experiences with caregiving, my PFA colleague has been volunteering in palliative care in our local community for a few years. My perspective is palliative care within LTC. We do have readings in between meetings and surveys to complete. MY PFA colleague and I keep the momentum going for ourselves between SC meetings by having an informal get together weekly, to discuss the topics/issues and how our involvement in the meetings assist in covering the many different, important, patient/caregiver circumstances and perspectives.

We listen carefully and ask questions of our members as to how they see suggested improvements we are working on tie/relate back to "benefiting" the patient, the family, the caregiver. We ask for examples when we don't fully understand language, procedures, medical speak jargon and provide our own insights on benefits and/or challenges we "see" which they may not have considered.

Find this approach works as we, during our second meeting, are now being asked what we think, instead of us having to initiate questions or comments. A couple of the members have even approached us after the meeting and offered to assist us with any questions or additional information we might have or, require. And, they provided us their contact information, saying we could contact them any time.

Based on these experiences to date, I feel we will continue to work well and productively together and achieve our goals, objectives. The key is listening, observing and asking questions that bring the discussions back to the question - is this putting the "patient-first" and if so, how? What are the benefits? How does this help, not help? Does it create any barriers, obstacles or leave gaps?

Hope this provides some ideas.... and, if anyone has additional ones, please let me know. This is very much about communication tools, and the more we have to choose from the more effective we can be

Best, Denyse

[Alies Maybee]

Thanks for the thoughtful response, Denyse. You make a great case for having more than one PFA on a research project (or indeed on any project). And, yes, communication is key as is relationship building. Cheers! Alies

[Alies Maybee]

Denyse, I'm again re-reading this thread. I love your approach and think it is great advice for newcomers to being partners in research:

"The key is listening, observing and asking questions that bring the discussions back to the question - is this putting the "patient-first" and if so, how? What are the benefits? How does this help, not help? Does it create any barriers, obstacles or leave gaps?"

I found during my first experience on the Research Management Committee evaluating grant proposals that asking questions from the patient perspective was a powerful way of re-focusing the group. It also meant I didn't feel the need to be expert.

Keep us posted on your progress. Also, check out the course on PiR under Opportunities. It is a good one that involves lots of discussion online. Cheers! Alies