more bold actions please

smoke

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. 

The Sinister Side of Patient Engagement

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I was a patient engagement person before there was such thing as patient engagement. Ten years ago, I was a mom who was hired by a hospital to advise leadership about family-centred care.  Back then, us family advisors were pioneers, cowboys in a new frontier.  The movement was focused on making the experience in the hospital better for families by creating a family council and it grew from there.

Something more sinister has accompanied this growth. While some hospitals maintain the purity of these patient engagement jobs by hiring those with lived experiences, others have sought to dilute it by hiring staff who do not even demonstrate compassion for the patients and families that they are supposedly to serve. Today, it is often clinicians who are hired into leadership positions in patient engagement, citing: ‘but everybody is a patient!’ – leaving authentic patients and families behind in their dust.

I’ve been despondent about this before, throwing my hands up and despairing: Patient Engagement Has Been Stolen From Patients, but after reading Isabel Jordan’s essay Patient Engagement: You’re Doing it WrongI grit my teeth and dig in my heels, solidifying this stance.   Please take the time to read Isabel’s important story.

How can these new Patient Engagement leaders get it so wrong? How is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone? I’ve gone on and on about the best practice of patient engagement: here, here, here, here, here, here, here, herehere.  Here’s an example of best practice, to contrast Isabel’s horrible awful experience.

If you are working in the area of patient engagement, consider Isabel’s piece very carefully. If you truly are a professional, you will welcome constructive feedback and reflect on what you’ve learned and how you are going to change your practice based on your learnings.  Perhaps you see an element of yourself mirrored in her words.

If Patient Engagement is becoming a profession, there needs to be accountability for it. Like other health care professions, Patient Engagement needs to protect the public they serve – through common best practice, standards, training + continuing education requirements and a path for the public to report misconduct and follow up with disciplinary action. If the health professionals have stolen patient engagement from us patients, then they need to start acting like professionals. Not rude, inconsiderate and disrespectful of the people they are supposedly committed to collaborate with.

Thank you Isabel for sharing your story and wisdom with us. Please share her post widely with those who engage patients: in health authorities, governments, hospitals, research projects, health affiliated organizations – anybody who says they engage patients. Patient engagement, patient experience people – wondering if you are doing a good job?  Turn to the patients and families and ask them.  That’s the only way you’ll ever know.

Never forget, it is an honour to work with patients and families in any capacity. Words are hollow here. If you don’t demonstrate to us through your actions that you believe this work is about serving people, you are in the wrong field of work.  

the radiation therapist & the patient

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I am super proud of this article I co-authored with Amanda Bolderston for the Journal of Medical Imagining and Radiation Sciences.  It is called The Radiation Therapist and The Patient:  Epiphanies, Stories and Social Media.

It covers a lot of ground:  relationships in health care, how ‘complaints’ are handled by organizations and the power of social media.  I’m particularly chuffed because Amanda and I wrote this together – a health professional and a patient. It proves my theory that if we endeavour to see each other as human beings, and not merely titles…well, that’s where the magic happens.

shut up and listen

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Toronto in November

I haven’t travelled by myself since my cancer diagnosis in February.  I’m partially healed (at least physically) now that some time has passed I took the opportunity to attend a child health research conference in Toronto last week. I’ve felt exceedingly vulnerable and reliant on my husband these past few months and I was nervous about travelling solo.  (Thankfully, I had many people in Toronto caring for me:  I’m grateful to Beth, Frank, Donna, Yona and Kate for treating me to meals and their warm company in the evenings).

I’m on CHILD-BRIGHT’s Citizen Engagement Council and had my expenses paid to attend the Brain-Child-Partners Conference.  For the first time in forever, I was at a health conference as a participant, not as a speaker.

I’ve stopped accepting speaking engagements altogether for many reasons:  I’m trying to build up my courage again. I’m figuring out why I speak – my intention – am I speaking for healthy reasons, or just to feed my fragile ego?  I’m also channelling all my depleted energy into my book project.

Being in Toronto as a participant gave me a new perspective on conferences.  If I’m a speaker, I’m all wound up in myself with anxiety before my talk and then I’m hyperalert for feedback afterwards.  This is both a distressing and exhilarating way to be.  Because I’m thinking about me, me, me all the time, I don’t take the time to shut up and actually listen.  Last week in Toronto, I finally simply sat and listened to what others had to say.

The Brain-Child-Partners Conference was unique in this way:  there were at least a dozen family and young adult speakers sprinkled throughout the first two days of the conference.  I had never seen such a variety of speakers, particularly at a research conference.  CHILD-BRIGHT itself is a huge collection of projects that has engaged over 50 families and youth to guide their research.

This conference could have easily self-accredited to be a Patients Included conference with a few adjustments – offering a webinar option for those who couldn’t attend and having scholarships for patient/family attendees.  Certainly the room was stacked with patients and families in the audience.  Most conferences I’ve attended have had a lone token patient speaker (sometimes me) – which is not diverse or representative in any way.  I never felt comfortable with that.  When I’m speaking again, I’ve vowed not to take on any future engagements for conferences that aren’t Patients Included and who do not have a wide representation of speakers.

Here are snippets of what I learned when I finally shut and up and listened.  Many of my insights came in the form of questions to think about.

1. Fix is a word I’m fixated on, admitted Jack Hourigan. She challenged the audience with the question:  How do you feel about the idea of fixing our children’s brains?  What followed was a thoughtful conversation about the point of therapies.  Does intervention have to end for acceptance to begin?

2. I was struck on the reliance on ‘apps’ as a solution to health care problems.  This reminded me of an experience  I had at a Hacking Health event – sometimes the best solution is a human solution, not a technological one.

3. There was a lot of talk about the system needing fixing.  We should never forget that we are all the system.  The system is made up of people, and that’s us – both patients and researchers alike.

4. I wondered how the researchers felt about the balanced ratio of patients/families to researchers at the conference.  I think of this as a quota situation:  the patient and family voices have been excluded for health conferences for so long, it is time for some catch up.  But one health administrator asked:  well what about my voice?  Is the inclusion of patients excluding others?

5. Cardiologist Ariane Marelli shared insight into her years of working with families who have children with congenital heart disease.  What I’ve learned working in medicine is to help families manage uncertainty, she wisely said.  There were many clinicians and researchers there who clearly cared compassionately for patients and their families.

6. If you want to know what youth thinks, just ask them, offered a young audience member named Jessica Geboers in a Youth Engagement Workshop.  (Note:  Jessica is a writer too – check out her perspective on the conference here).  Sometimes the simplest solution is the hardest one to actualize.  Just ask them.  That’s a good mantra for patient-family engagement.

7. 
Jennifer Johannesen‘s talk deeply challenged the conference participants.  She asked are patients valued by researchers only for symbolic reasons?  For us patients and families, she offered, don’t allow flattery to prevent you from asking important questions.  There was lots to chew on – the full text of her talk is here.

8. To me, this conference boiled down to:  how can we each give up power to partner together?  How do we create a sense of belonging for everybody?  How do we ensure that everybody has a voice?  How do patients not get overshadowed by caregivers?

9. Related to that is diversity – and despite having family representation, this group did not reflect the diversity that is present in a hospital waiting room.  There was a lack of youth voice (having the conference on a weekday doesn’t help for school-aged youth). We were a homogenous group:  mostly moms, university educated, upper end of the income bracket.  As Jennifer Johannesen pointed out – whose place are we taking?  We must make room for other voices, in innovate and creative ways.  The most obvious solution to this is not expecting people to be able to take time away from their work/families to fly to Toronto to attend a conference.  We must go to the people and not expect them to come to us.

10. Here’s a gentle reminder to all speakers.  It is difficult to be both a scientist and an excellent communicator.  I watched Dr. Christine Chambers’ exceptional talk about the It Doesn’t Have to Hurt Campaign.  Christine herself is a rare and engaging speaker – she is funny and warm – but she also worked with a graphic designer to create her slide deck.  I wish for all researchers to partner with communications folks to share their important information – and to ban the dreaded ‘reading bullet points off the slides’ approach.  Or at the very least, I’d recommend reading Presentation Zen to pick up some tips about designing slides and delivering talks.  Never forget the power of stories – audiences remember human stories, not data crammed onto a slide.

Finally, here’s my plea: If you are a health conference organizer, please seriously consider including patients and families as speakers and participants.  As patient speaker Symon Hay said about the Brain-Child-Partners conference, this is the start of something new – where our voices matter.  Embed diverse speakers in your program as opposed to offering a separate patient theme or segregated day.

True partnerships between patients and health care professionals will only happen if we see each other as human beings, not as titles or roles.  This means being human at the point of care, in boardrooms and at health conferences too.  This is a concept whose time has come.

shed your parkas + titles at the door

tray
The Stollery Family Centred Care Council had its first meeting in October eight years ago. Soon after the holidays were approaching, so we decided to have a Christmas party. Hosting a party with this newly formed group of people seemed like a natural thing to do.

It was wholly unofficial, but in cahoots with Heather, the Family Centred Care Manager, we went ahead and did it. In the early days, we embraced a just do it and apologize later philosophy. We were pioneers in a new land.

We had no budget and we couldn’t serve alcohol in a hospital setting (of course), so my husband and I decided to host at our house.

We sent out invitations to the entire Council – senior leadership, family reps, physicians, clinicians – stressing that this was a family party – partners and kids were welcomed. We made it potluck to cut down on expenses and I think I had a jar at the door for folks to donate to our booze fund. Heather and I wrote out personalized Christmas cards for everyone. I bought sequinned Santa hats from the dollar store for all the kids. I don’t know how much all this cost. There was no funding and it didn’t matter.

As is typical for a December evening in Edmonton, it had snowed and the roads were icy and awful. But our doorbell kept ringing and boots and parkas piled up in our entrance as more and more guests arrived.

Here’s what I remember: Serving cocktails on a silver platter at the front door. Children running wild through our house: kids jumping on beds, kids running up and down the stairs, kids pulling out all my son’s toys (Note: this was all awesome).

The Senior Operating Officer of the hospital was there – her newly-retired husband had cooked an amazing dish for potluck while she was at work and he had braved the roads to meet up with her at our place. Another senior director came with her two children and husband. Her kids were playing with the so-called ‘Stollery kids’ – our kids, the patients – who were a diverse lot, a collection of children with disabilities and medical conditions. Seeing them all zooming around our house – at varying speeds, with various mobility issues – was as it should be.

My husband standing in our kitchen, deep in conversation with a dad whose child had died at the hospital the year before. Me, checking on kids downstairs, standing in the doorway of the bathroom, talking to a PICU intensivist while his young daughters ran amuck around us. A neonatologist popped by on his way from his martial arts class, leaning against the wall in the hallway chatting with a mom. It was a houseful of people connecting with people as human beings.

My husband and I hosted this party like every other party we had ever had at our house. Our formula was a bounty of food, fancy cocktails, blaring music and an open door. For whatever reason, people showed up. I understand now how important the simply showing up is. The people who came to that party were providing evidence of their early commitment to the family centred care cause. For the staff, this was an unpaid, after-hours affair. For the families, this was the end of a long day. But they still showed up. I believe this evening was a tipping point. It was the beginning of culture change at the hospital.

There were Christmas parties like this for about three years. The amount of people involved in family centred care at the hospital expanded and outgrew a house party. The celebrations switched to summer barbecues at community halls instead, which was a natural progression of growth.

But those early holiday parties were special. They were intimate and inclusive affairs.   There was a complete shedding of roles those evenings. Titles were taken off along with the parkas and boots at the front door. There was a relaxing of tightly held positions with a cocktail or two. Meeting everybody’s partners and kids felt really important. By the end of that first dark December evening, we were no longer ‘professionals’ and ‘families.’ We were colleagues and blossoming friends.

If you are reading this and thinking that there’s no way a house party with your hospital staff and patients/families would ever happen, here’s my challenge to you.

If you really want to partner with the people you serve, you need to see them – and your staff – as people first. It is your job to remove all the barriers to create an environment where you would be able to host a party at your house. (YES AT YOUR HOUSE).

If this seems impossible, you have to take away the preconceived rigid notion of what it means to be a professional, ignore the policies and procedures forbidding socializing and fund the damn party out of your own pocket if you have to.

This is not a movement created around a boardroom table. Providing opportunities to lose your title and connect as human beings is the only way you actually seal this deal. Celebrating together – breaking bread, getting to know each other, toasting to the season – is a good way to start.