retweeting is not enough

Screen Shot 2019-02-14 at 4.45.46 PM

Last month I made a racket about leaving the patient engagement world.  I resigned from all my current positions as a patient representative on committees and groups.  My rather rhetorical question was: To what end have I put hundreds of (mostly unpaid) hours of work working with organizations to change a health system that does not want to be changed?  I have been sold a lie.  Nobody can show me any evidence that patient engagement efforts lead to meaningful system change.

Many people, including senior leaders of health organizations, retweeted my blog post saying things like: A must read!  This was momentarily flattering, until I recognized once again that talk is cheap without action. Of the organizations I departed from?  Three simply ignored me after I resigned.  One said, ‘I’m sorry you are burned out.’  And one leader sent one of her staff members to meet me for coffee.  I found the last response most promising.

And I hereby introduce the notion of The Exit Interview into the patient engagement world.

If you are collecting feedback about how you are doing patient engagement, I would respectfully suggest not only speaking to those currently involved with your organization.  Please consider scheduling a conversation with those who have left.  There are great lessons for those leaders who are unafraid of constructive feedback and who are open to being curious.

An Exit Interview says this:

  • I am not making assumptions about why you left.  Common assumptions associated with patients are: you burned yourself out, you are too busy, you are sick.  (Note these reasons deflect the responsibility for the leaving solely onto the patient).
  • I am open to the notion that if this is relationship-based work, I might have a role in your departure.
  • I am curious how our organization (and indeed me) could have done a better job engaging you.
  • I will apply the learnings from the Exit Interview to improve and grow.
  • I will do my best not to take your constructive feedback personally.
  • I acknowledge the courage it takes to speak up to give this type of feedback.

Alas, the lone organization who scheduled the Exit Interview with me cancelled our meeting.  We picked another date but then the staff member cancelled again.  This time she didn’t reschedule.  I get it.  I won’t let the door hit me on the way out.

Less Retweeting.  More Action.  An Exit Interview is a great start, a practical idea that could be implemented right away in Patient Engagement programs.  Unless you are only looking for cheerleaders, which means that engagement is an exercise in tokenism to you.

I only get one swan song and this is it.  My own take-away lesson is this:  perhaps sharing our time and stories isn’t about changing the health system after all.  Maybe it is instead about making connections with one person at a time.  Maybe one single person chatted with me in the hall or read my writing or heard me speak and tilted their head and paused to think, ‘gosh I never thought about things that way.’  If us patients and caregivers advance the understanding that there are different perspectives, diverse points of view, other ways to look at things – well then maybe that’s not a failure after all.


speaking my truth to your power


I believe caregiving is a women’s issue.  Breast cancer is a women’s issue too.  (Please accept this caveat – I know there are men who are caregivers and men who have breast cancer.  But this post is about women because I am a woman).

Thinking of Dr. Christine Ford reminded me of all the times I’ve been harassed, abused, ignored, oppressed and minimized throughout my entire life, all 50 years of it.  If you are a woman, I know that you are thinking of your darkness too. Yesterday, I wept in my car considering this:  I am Dr. Ford.  We are all Dr. Ford.

My invisibility began when I was a little girl and moved through nursing school, my first marriage and my workplace. I learned to be a good girl, to be nice, to behave and to not make any waves. When I became a mother, I became even less detectable. And when I was the mother of a child with a disability?  Even though my son has a visible disability, both he and I disappeared off the radar almost entirely.  I transformed into an invisible mom.  When I was diagnosed with breast cancer, I became one of the legions of women whose health concerns were ignored and dismissed.  I was just another middle-aged breast cancer patient; a mere shrug from the staff at the cancer hospital.

While I will never ever say that cancer is a gift, one thing that has happened this past year – with hard inner work and the help of a good therapist – I now have razor sharp clarity.  Cancer slaps you in the face with your own mortality.  I know for sure that my time on this Earth is limited.  I thought I had more time.  I’d better step up and focus on what’s important.

Here is my plea:  Do not stop speaking up.  If you are feeling hopeless, read Emma Gonzalez’s wisdom here.  Speak your truth to the power.  The power includes people who work in health care – a setting where there are huge unrecognized and unchecked power imbalances. Health care is not made up only of men.  There are women in power there too, lots of them.  As a mom and a patient, I’ve at times been labelled difficult, crazy and hysterical.  Cancer has allowed me at least this:  I don’t care what you think of me anymore.

Speak your truth. Don’t let the bastards get you down.  I’m with you.  Don’t stop, now more than ever.  Keep going.  Rise up.  The revolution begins at midnight.

training for all


I recently asked this question at a webinar about patient-oriented research. It was in response to a comment that patients need training to work with researchers. But musing that collaborations are mutual, I was wondering why it was only the patients who need training. Wouldn’t the mutuality lend itself to training (delivered by the patients) for the researchers too?

My question about training researchers was met with nervous laughter. I don’t know if it was because the question made people uncomfortable or if the audience (of mostly researchers) was laughing at my question. Could I, the mom of a kid with a disability and a former cancer patient with a lowly undergrad degree in English, dare to think I could train someone with a PhD?

I hear about ‘training patients’ a lot. Another version of this is ‘coaching parents.’ This is about stuffing patients and families of all shapes and sizes into a rigid deficit-based model.  This model is almost always system and provider-centred.

I’d respectfully suggest that we all need training to understand each other. Patients need information about statistics and analyzing data. Researchers need information to understand a patient’s experience in the health care system. Researchers communicate through data and patients communicate through stories. Researchers need to understand stories and patients need to understand data. Our humanity is where we meet in the middle.

how to start a movement

I do still say yes to carefully chosen speaking engagements, despite my recent jaded post.  I’ll share my story when I feel an organization has demonstrated that their values are in alignment with mine.

One of those organizations is the Stollery Children’s Hospital.  I was their Family Centred Care Consultant from 2009 to 2011 and I was pleased to give a talk last night to their Patient and Family Centred Care Council to talk about the history and why a group of moms, including me, lobbied so hard for the hospital to start up a Council ten years ago.

One of the benefits about crafting a talk is that I get to reflect and revisit my own intentions.  I thought about why we began the Council, (to have a mechanism to formally introduce the family voice into the hospital), how we did it and what we did.  (I’ve written about some of what we did here and here and an article about their Family Talks program is here).

I realized while preparing my talk that how we created the Council and subsequent patient and family centred care initiatives was through first building a caring community amongst families, staff, physicians and leadership.   And that is because community engagement or patient centred care or whatever you want to call it –  is first and foremost a social movement.

Margaret Wheatley says it well:


And the guy dancing with his shirt off in the video above?  The people willing to dance with their shirts off begin the movement, but it is the folks who join the dancing on the hill who continue it on, as has happened at the hospital long after I left.

I’m proud to have been a part of this movement so long ago.  My fear for other organizations is that engagement has become merely a volunteer coordination exercise to get butts around the boardroom table. I wring my hands because I can see that the intention of community engagement is being eroded by bureaucracy and professionalization.

My epiphany last night for folks looking to start or revitalize a movement: Harken back to your grassroots, to your community, to why you are doing what you are doing, because that’s where the heart of a movement really lives.


start here for meaningful engagement

Meaningful family engagement

The original image is here on Karen Copeland’s Champions for Community Wellness website. Please use it, share it, but don’t alter it.  Give credit back to Karen’s site.

I keep hearing that researchers, patient engagement staff, clinicians and administrators are well-intentioned when they are tasked with including patients on their committees, in their conferences and with their research.

Let’s move past being well-intentioned to actually doing patient and family engagement right.  If you don’t evolve beyond well-intentioned, there is a chance you are causing harm to people with your misguided efforts.

I also hear of ‘patient engagement training’ that is offered to patients but I can tell you that the other group that need training are the staff who are actually trying to do the engaging.  And you know who should be facilitating this training in a paid work capacity?  The patients and families themselves.

I could share many resources, written by patients and families (like the Patients Included Charters), but let’s start with this infographic.

This tip sheet says family engagement, but swap in the word patient or person or anybody you say you want to engage in your work.  Think of these tips in every single interaction you have with these folks.

Use it as your lens to treat all people with respect in a meaningful way.

(Big credit to Karen Copeland for being open and sharing her creative talent to partner with me to create this work).  

more bold actions please


I’m watching the events of the Canadian Medical Association’s Health Summit in Winnipeg unfold on Twitter.  I’m pleased they offered patient scholarships and that there are 27 Patient/Caregiver Advocates there in amongst the 700 health professionals, including a handful of my friends and colleagues, like Julie Drury, Donald Lepp and Courage Sings.  I admire them for their perseverance and commitment, as they have travelled great distances to show up because of their dedication to partnering with health professionals.  I’m sitting here in my bathrobe at my kitchen table, not even having bothered to apply for a scholarship.  I’m weary. I tip my hat to these patient/caregiver leaders.

At the very same time, there is a Doctors Stopping the Pipeline Bold Action and Witness Rally this morning, led by the Canadian Association of Physicians for the Environment (CAPE). Physicians have gathered at the Westridge Marine Terminal in Burnaby, risking arrest if they get too close to the gates and violate the court injunction because they believe that climate change is a threat to public health. (I believe that to be true, too, and my husband is down at the rally representing our family).  The sky is thick with smoke from the wildfires today.  The sun is but a red dot in the sky.  I refuse to accept this as the new normal.  Wildfires have been made much worse by climate change.  It is time we connect the dots.

There are 700 physicians in a ballroom at the Convention Centre in Winnipeg and a handful of physicians standing before the Kinder Morgan gates in the suffocating smoke.  Thousands more physicians are working hard today in Canada in emergency rooms, surgery theatres and clinic offices.  They are doing the work that needs to be done, but something’s gotta to change.

(Patients are)…the greatest unused asset in health care system today – Dr. Brian Brodie, Chair Canadian Medical Association

This quote comes from Dr. Brian Brodie from the Health Summit this morning. While I wince at being called an asset, I agree with this philosophy and appreciate the notion of patient engagement has been identified as important concept for physicians.

I’m both a patient and a caregiver.  I’m always looking for opportunities to share my feedback, stories and wisdom with health professionals.  But post-cancer, I’m tired of having to be the one to hustle.  I put up my essays on my blog and whoever reads it, reads it.  I’m exhausted from begging for a seat at the grown up table.

What needs to change?  More bold action and more witnessing, like at the rally this morning.  If you want to partner with patients and families at point of care or in your organization, just start doing it already.  This would be a bold action.  Grab a page from the CAPE playbook and stand up for what you believe in.  Come to work every day to bear witness and hold space for the suffering of patients and families. Don’t turn away.  I’ve had enough with the hollow words on strategies and mission statements followed up with no sustainable change.

I hope that every one of those 700+ delegates leave the CMA Health Summit with a firm commitment to follow through on their bold actions.  I guarantee that change will not happen waiting around for the system to change.  Change will happen one single person at a time, and the only way we can do this is together.

two steps backwards

See when it starts to fall apart
Man, it really falls apart – Tragically Hip

I am watching across Canada as the patient and family engagement movement in hospital settings is taking two steps backwards.  Councils are being disbanded, patient and family staff members (whether they are paid or unpaid) are resigning or being forced out of positions and are being replaced with clinicians.

There is a real fragility that underlies the patient engagement movement.  If patients and families behave themselves, then all is fine.  The minute there is a change in leadership, or something gets hard – like an ethical issue comes up or there is conflict – then BOOM it is over.

It seems as if this movement is so precarious that it can only survive when things are going well.  I define going well as: patients and families mirror their behaviour as close as possible to the behaviour of clinicians and administrators. We must dress like them, talk like them, show up when they tell us to and agree with them. Of course, this erases any hope for diversity and leaves the pool of engaged patients university-educated, articulate and economically well-off, just like the clinicians and administrators themselves.  Patient engagement quickly becomes doomed the moment there’s a sniff of any difference or contention.

There is now a trend throughout the country to replace paid families or patients with health care clinicians in patient engagement roles.  I think this is because:

  • The patient/family engagement movement has become too successful.  We have amassed too much power in the eyes of administrators.  This, ironically, means that engagement has become no longer tokenistic and is finally meaningful.  But to have power you have to take power – and administrators and clinicians simply aren’t willing to give their power away.
  • Paid family members and volunteers are not ‘professionals’ (nor should they be, especially if people are truly looking for diversity) but health care is built on the structure of professionalism.  Having laypeople make decisions in ways that are not tokenistic is just too much for most bureaucrats.
  • The way patients/families are treated at the organizational level mirrors the way they are treated at the point of care.  If there is bad morale and low patient satisfaction at the bedside, then efforts in patient engagement at the organizational level will suffer too (and vice-versa).
  • Many people in senior leader positions do not understand the role of families/patients in organizations.  They might understand the bedside engagement, but the patients in organizations concept is new and poorly understood.
  • Health care culture is also exceedingly slow to change to new ways of doing things.  Patient engagement at the organizational level shakes the status quo. In the Canadian health care system, the status quo does not wish to be shaken.
  • Patients or families in paid positions, on councils or committees do not have a common job description, standard training or defined core competencies. In other words, they are not regulated in any way.  The health care environment is one that demands structure and regulation in order to gain credibility and respect.
  • Patient engagement still butts up against some professions and threatens them (I’m thinking of those clinicians who think it is their job to advocate for patients, not the job of patients and families themselves).

Replacing patient and families with clinicians swings the pendulum back to where we were 15 years ago.  Clinicians are now speaking for us instead of creating environments where we can speak for ourselves.

I’ve laid out the reasons for this problem and will continue to ponder solutions.  I would suggest that patients and families first abandon any tokenistic work right now and search for the rare environments where true engagement is still happening.  Be picky about how you spend your time.

For instance, my colleague Isabel Jordan has found success as a family partner in the area of research.  While some hospitals still have the reputation of being champions in patient and family centred care, meaningful engagement in the hospital world is becoming rare.  If you find a place where you are being treated as a respectful partner, hang onto them tightly.  These scarce places seem to be going the way of the dinosaur.

It is time for patients and families to regroup and rise up again on our own and abandon the shackles of the health care system.  How do we do this?  I think the answer lies outside of the system, not within it.

One thing we can do is to keep telling our stories on our own platforms instead of politely waiting in the wings for conferences, hospitals or universities to extend us invitations to share our experiences.   Use your voice now.  While the system now seems to prefer that professionals take over speaking for us, never let them steal your story.  Your story is the one thing that is yours. Protect it fiercely.  Now is the time for us to take our power back and we will rise up again, one story at a time.   xo.

Edited to add:  I’ve written about both best practice + poor experiences in patient engagement here: here, here, here, here, here, here, here, herehere, here.