my line in the sand

shut it down

I had a number of speaking engagements booked with health conferences when I was diagnosed with breast cancer two years ago.  These gigs are scheduled by organizers many months in advance.  As the mom of a kid with a disability, I had a burgeoning career as the family voice or the inspirational speaker for health care crowds.

After I got cancer I cancelled all my talks.  The reason at the time was that I had no idea what kind of shape I’d be in during or after my treatment.  I didn’t even know what my treatment would entail until after my surgery.  The unspoken reason was that I didn’t even know if I’d be alive to fulfil my obligations.  Cancer, especially at the time of diagnosis, felt like a death sentence to me.

When I popped up a year later, I was quite traumatized but still alive.  I was asked to present about my breast cancer patient experience at a health conference.  I tentatively agreed, but the more I thought about it, the more anxious I got.

This wasn’t stage fright or about being out of practice.  Part of it my reluctance was that I was (and am) still in treatment in some ways.  I have ongoing scans, other diagnostics and appointments with oncologists.  I continue to be angry about the way I was treated – and am treated – in health care.  After great reflection, I turned down this speaking engagement.  The topic of cancer is too close to me.

Funnily (or not), many people in health care who I thought were friends and colleagues ceremoniously dumped me when I stopped speaking at their events.  I don’t know if this had to do with my cancer, or if the only reason they were friendly with me was because I could do something for them.  When I stopped speaking, they disappeared.  I know now that it was naive for me to think they were my friends.  This hurts but I’ve had so many other losses that I’m trying to shake this one off.

My unease with being a patient speaker at health conferences, no matter the topic, boils down to this:  parading out a lone patient speaker feels like tokenism to me.  While my fragile ego loved the attention on stage, I never had any evidence the stories I shared made a difference.  And worse, I was the privileged woman who did nothing more than make the audience comfortable. I had so much in common with the health professionals I was speaking to that I barely pushed the envelope.

I’m university-educated, of moderate socio-economic status and have worked in health care my entire adult life.  That’s why the conference organizers related to me and why I had such a healthy speaking career.  They could see themselves reflected in me.  This might sound fine, but here’s the rub:  I do not and never have represented the folks who are actually sitting in the hospital waiting room.

I feel uncomfortable being the only patient voice, no matter how good it feels to me to be looked at as the patient expert in the room. There must be other people behind the podium whose experiences and lives are different than mine.  I’ve heard a broken record about the lack of diversity in patient representation for years, but this ain’t ever going to change unless us privileged ones hand over the microphone and move the hell out of the way.

I’m opting out of the health conference circuit and sticking with facilitating storytelling sessions with small family groups and guiding staff through reflective practice workshops.  That’s my thing now and that’s what is meaningful to me.

If you are a patient or family speaker and you don’t agree with me, that’s okay.  All I’d ask if you’d consider your own personal intentions behind public speaking so you can draw your own line in the sand.

Lines in the sand can include speaker compensation, or insisting on diverse patient voices or asking that conferences be Patients Included.  If you dig deep inside yourself to find out your own special ‘why’ you share your story, this will safeguard against people using you, too.  Your story is worth it and you are worth it too.

to what end?

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Me in my glory days.  Photo credit: David Hungate

I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years.  I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience.  I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees.  I’ve spoken at many national and international health conferences as an inspirational speaker.

Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management.  In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.

I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.

All of me is tired.  Getting cancer two years ago tipped me over the edge.  Improving health care for patients and families has been my life’s work.  My ongoing experience in oncology has shown me that things have not improved for patients one little bit.  To what end have I dedicated myself to this work?  What difference have I made?

I’m not trolling for compliments.  I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change.  There is no evidence in my recent clinical experience.  So why continue?

I started my advocacy work in pediatric health care after my son was born with Down syndrome.  I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital.  If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.

Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son.  What does this say about how I felt about the meaning of my son’s life?  Now I know that he has meaning by simply being human.  I don’t need to try to change the world to validate his worth and existence.

I would have also said that I did advocacy work to ‘make a difference.’  But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make?  Show me the evidence.

This past week I had a trifecta of events.  I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me.  If I had been less worn down and brave enough, I would have stood up and asked:  What can us patients do to improve Canada’s health care system?  His clear and factual accounts of the myths of Medicare hit very close to home.

“As Canadians, we are all too accepting of mediocrity,” he said.  “Once in the health care system, you ask yourself – what the hell is wrong with the system?”  These true statements chilled me to the bone.

Then I had an unpleasant encounter with a new oncologist.  And then a terrible appointment letter showed up in the mail.  My never-ending shitty patient experience just goes on and on and on.

What the hell is wrong with the system?

All my talk about kindness, compassion and the patient voice has been for naught.  (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).

The past two years I’ve slowly been withdrawing from the patient engagement world.  I no longer accept speaking engagements.  I don’t volunteer on committees or with projects.  I think: what’s the point?

I still rabble rouse on Twitter and Instagram and I write essays on this blog.  I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher.  But writing is something in my realm, in my control.   My own self tries to treat myself with respect and kindness.  I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.

I don’t want to deter you if you believe that patient engagement will change the health care world.  This has not been my experience but maybe it is yours.  But I must plead with you: Please don’t allow yourself to be taken advantage of.  Don’t let them ‘use’ your story.  Be particular when accepting opportunities.  Think, as I rarely did:  Why am I doing this?  What is the organization’s intention?  What is my own intention?

Zoom back 12 years and I was at a health conference with a team of family members and clinicians.  Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted.  I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.

I left the conference room and went into the elevator to compose myself up in my room.  I was naive and hurt.  The pain of this made me weep.  I had thought I was a full partner and I clearly was there only as a token family representative.

The elevator doors opened and another woman walked in.   It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.

“What’s wrong?” she said, gently hugging me.  “Come to my room and we will have a chat.”

I sat on her bed and cried, feeling betrayed and used by the clinicians.  She comforted me but then said firmly:

Don’t give ever them all of your heart.  Because if you do, they will chew you up and spit you out.  

I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself.  I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years.  Why have I done this?  I wanted to belong.  Attention massaged my fragile ego.  I had a need to be heard.  And yes, I wanted to make a difference.

No more.  I quit you health care.  Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.

I’m breaking up with you patient engagement.  You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.

my sour grapes

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This quote sums up what I observe as I see the whole Patient Engagement thing drift further and further away from the people at the grassroots.  Patient Engagement (and before that Patient Centred Care) used to be a movement of the people.  It is no longer a movement and is now wholly owned by organizations that use patient and family representatives who act, look and talk like them to pretend they are listening to all the people.  Patient engagement has become over-professionalized, less-diverse and now represents only an handful of elite chosen voices. Patient engagement does not look like the people who are sitting in the waiting rooms in clinics and hospitals.

If you are one of those voices and you are not actively creating space for people who are different from you, then you are part of the problem.

I know this because I used to be one of the chosen people.  I was a family representative in pediatric health care in Canada.  I chaired national committees, spoke at conferences and overall felt like a pretty important person.  Then I got cancer.  This was my reckoning.

In my recovery after cancer treatment and my struggles to get back up from my knees, I realized that nobody in oncology was interested in any of my wisdom about how to make things better for patients.  I was just another middle-aged breast cancer patient (and breast cancer patients are a dime a dozen in the cancer world).  This was extremely humbling.  This humbling leads me to Seth Godin’s quote.

If you are one of the chosen ones to represent patients and families, please realize that the only person you can represent is yourself.  If you are a family member, you cannot and should not represent your loved one.  You can of course speak and you should speak, but you own your own story and nobody else’s.

Always, always consider:  how can I bring other voices along with me?  How can I use my power to create opportunities to share at the podium or around the boardroom table?  How do I inform myself by actively seeking out and listening to people who are different than me?

Lately I’ve turned down speaking engagements and committee appointments because I don’t think we need another white, educated, economically-privileged voice like mine amplified to health care audiences (who are mostly just like me.  It is the ultimate in confirmation bias).  It is similar to the Manel concept – unless we start saying ‘no’ and making room for other voices, we will be the only ones taking up space.

Here are some things you can do: ask to co-present with someone else or suggest a panel format that offers different people’s opinions.  Say ‘no’ if you are the only patient or family representative, or you are getting asked to work for free.  (If this happens because you can afford it, there is NEVER EVER going to be diversity).  Use your chosen voice and power to demand change.  The time has come to share power with those who don’t act, look or talk just like you and me.

giving a talk

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Click here for original, full-size version:  Giving a Talk.

I have attended many health conferences in my time.  Lately I’ve been observing how effectively (or not) speakers communicate with their audiences.  The best speakers are humble, human and passionate.  Alas, many folks resort to blandly reading their speaking notes off bullets on slides.  The sad result of this approach is that people leave the talk with no take-aways, no knowledge to transfer to their workplace, no inspiration and no bold actions.  What happens in the conference room stays in the conference room.  That’s a waste for everybody, including the presenters.

I found a reference that said up to 70% of conference learning is lost 24 hours after a conference.  70%!  This is my own call to action to end this conference waste.

What if speakers adopted some easy strategies to be more engaging and communicate more effectively in their talks?  While my experience includes coaching families and patients to share their stories at the podium, I would humbly suggest that all conference speakers, including clinicians and researchers, could benefit from a few simple hints.  I partnered with Karen Copeland from Champions of Community Mental Wellness to create this Giving a Talk infographic with tips to remember when preparing and delivering a talk.

Really, giving a talk should be about communicating with your audience, not just dumping information.  An engaging, creative talk, even about a technical or clinical subject, is knowledge translation at its finest.  This is not about dumbing things down.  It is about understanding your audience and how people learn. As the great Di Vinci said:  Simplicity is the greatest sophistication.

ps:  For more information about effectively sharing your story,  here are two links to information about a Family Talks and a patient mentoring program.

 

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. 

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.