my sour grapes

IMG_3846

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

Screen Shot 2018-10-23 at 9.56.40 AM

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

Screen Shot 2017-11-13 at 10.34.50 AM

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.

on one hand, the butterflies

recite-1bl15z6

This quote from Maria Shriver is a reminder not to be afraid of being afraid. In fact, the most courageous people are afraid. If you are a patient and family speaker and you find yourself behind a podium, you will feel anxiety and that is ok. This means you are about to do something daring, something so great that so many other people are terrified of doing. You’ve overcome your fear to climb up onto the stage and that’s what really matters.

Brene Brown says, “if you fail, at least you will fail daring greatly.” In her book Daring Greatly, she deconstructs the great Teddy Roosevelt speech to point out that it is not the critic who counts, it is the (wo)man who has dared to enter the arena.

My son is a drummer in a punk rock band. He has played countless gigs in a mash-up of venues: basements, garages, clubs, halls and festivals. I once asked him: “aren’t you nervous before you go up on stage?” and he looked at me as if I had three heads.

“I’m not nervous, Mom,” he said slowly, so I could understand. “I’m excited to be playing.”

Ah. There are so many dichotomies with public speaking. This is true for all speakers, but especially true for patient and family speakers.  We have so much more skin in the game, because sharing personal stories from health care makes us so very vulnerable.

One on one hand, it is normal and even expected to be nervous. On the other hand, why label your feelings in a negative way? Instead of being anxious, why not reframe and rename these butterflies as excitement? I have no answer to this, as I continue to drive white-knuckled to speaking engagements while still accepting and even seeking out these same engagements.  On one hand, nerves give you energy, on the other hand, nerves make you nervous.

For patients and families sharing their stories, more dichotomies ensue:

On one hand, prepare thoroughly and on the other hand, don’t appear too scripted because you will come off as robotic.

On one hand, know your material well and don’t read your words, on the other hand, it is impossible to memorize 30 pages of speaking notes.

On one hand, showing emotion is good, but on the other hand, don’t burst into gasping, sobbing tears.

On one hand, connect with your audience using humour, but on the other hand, don’t stand up there and be a cheerleader.

One one hand, be self-deprecating to show humility, on the other hand, don’t be too apologetic.

On one hand, share negative stories, but on the other hand, do it constructively and don’t scold the audience.

On one hand, allow yourself to be vulnerable in the telling of your story, on the other hand, be respectful to all hecklers even if they are being total and complete jerks.

On one hand, your story is the most transformational element of many conferences, on the other hand, don’t you dare presume to ask for money for that speaking engagement.

On one hand, don’t be greedy and ask for too much money, on the other hand, don’t undervalue yourself.

On one hand, show passion, on the other hand, don’t come off as angry or hysterical, especially if you are a woman.

One one hand, tell the truth, on the other hand, don’t offend your audience.

On one hand, it is your message that’s most important, on the other hand, how and why you deliver that message is more important.

On one hand, the soft stuff is inspirational, on the other hand, where is the data?

On one hand, you can only speak on behalf of your own experience, on the other hand, try to speak on behalf of all patients.

On one hand, nobody cares how you look, on the other hand, don’t dress too casually (sign of not taking this seriously) or too formally (do you think you are better than those in the audience?).  Don’t wear jangly bracelets, stripes or big florals, or all black so you look like a floating head.

On one hand, don’t worry, your video will work, on the other hand, the technology guy isn’t answering his page.

On one hand, humans are not perfect, on the other hand, there will be a member of the audience counting all your ‘ums’.

On one hand, being a ‘mom’ is enough, on the other hand, play up any professional background you have to ensure credibility.

On one hand, not everybody will get your message, on the other hand, that guy asleep in the front row is disconcerting.

On one hand, is this worth all the stress and sweating, on the other hand, it is only through sharing our stories that we are going to change the world.

Bravo and brava to all those patients and families standing in front of a microphone to inspire positive change in health care (and also the education world).  I bow deeply and tip my hat to you – keep talking.  Keep grabbing that microphone.  Keep using your voice. Keep accepting those engagements.  Keep asking for a fee.  Keep asking if conferences are #patientsincluded. Keep feeling scared, but keep taking a deep breath and keep showing love for your audiences.  As Mary Pipher says, this is where the transformation begins.

behind the boy in the moon

I wept during Ian Brown’s plenary talk on Tuesday at the CAPHC conference. Big wet tears leaked through my mascara. I stopped myself just short of audible sobbing.

Towards the end of Ian’s closing words, I peeked at the audience around me. To my surprise, they were crying too: researchers, academics, administrators, physicians – those of impressive titles, but all people too. I pulled my tissues out of my mom purse and passed them around my table.

I knew why I was weeping, but I wasn’t clear on the reason for their tears. I am the parent of a young man who has an intellectual disability. I, too, have a little dream of a community of love for Aaron, like Ian’s dream for his son Walker.  But clearly my professional colleagues had their hearts touched and their tears triggered for different reasons – perhaps they were thinking about one of their past patients, or an aunt or an uncle, or even about their own vulnerability. I’ll never know.

Ian’s talk, although centred on people with intellectual disabilities (finally, they had airtime on a stage) was also a talk about what makes us human. And that’s not success or competition (as many of my accomplished friends are engaged in), but instead he expressed what makes us human is simply love and belonging. People with intellectual disabilities understand that deeply. As Ian said, the disabled do the work of love.

I can’t adequately summarize his talk. It was a profound homage to people with intellectual disabilities – the likes of which I have never bore witness to before.

I heard Ian speak in 2009, also in Halifax, also at CAPHC, and knew him to be brutally honest and real – unafraid and apologetic – refreshingly with no reverence for the graduate degrees and fancy titles that filled the room. I knew Tuesday’s talk would be important, and delayed my flight home until the next morning to see him. I knew it would be an important talk and it was.

The whole pediatric health conference had been focused on fixing: deciding who was worthy of fixing and funding; research focused on helping families to fix their children; and a session mocking patients who were trying to fix themselves by turning to alternative medicine.

All this fixing talk made me unsettled by Tuesday afternoon, after crashing from my high from Sunday’s CFAN Symposium. In stark contrast, Ian told the health care audience to stop trying to fix his son, to “pay attention to the person he actually is”. He continued, “Let us put medical care behind human interaction. Let us build communities that are much less bureaucratic, much more inclusive…and that embrace and celebrate the beautiful grace of people like Walker.”

Ian Brown was a messenger for love and belonging – the two things that really matter in health care – the only way we are going to see our way through the big costly bloody mess that is our health care system. He was an eloquent poet, each phrase carefully chosen, spoken straight from his Dad heart, passionate and poignant. I furiously scratched snippets in my notebook. About his son: what value does Walker’s broken life have?

About building a community: for once the disabled would have a home with a great view…where all you have to do is keep company with one another.

In the end, Ian challenged us to join the intellectually disabled and be touched by the grace of who people actually are, not by who we think they should be.

Later that night, I FaceTimed Aaron: ‘Hi Mom!’ he said brightly, his round face and almond eyes lighting up the screen, ‘How was your day?’ I was struck by the gift that is my son, by the very fact that he was born, that he is with us, that he is human. There are so few people who understand him in this world. He shows us the path to love every single day, over and over again. If only we can adopt enough humility to push our own egos aside to clearly hear what he’s trying to say.

facetime