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.

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:

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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.

 

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.  

there’s not one right way to do cancer

I’ve been carrying Audre Lorde’s Cancer Journals around in my bag for months. There’s so much to admire in her book: her call to women not to be silenced, her refusal to go back to ‘normal’ and wear a prosthetic to please men or make the nurses in the oncologist office more comfortable.  She asks:

What are the tyrannies you swallow day by day, until you attempt to make them your own, until you sicken and die of them, still in silence? 

Then I read Elizabeth Wurtzel’s piece on having advanced breast cancer:

Everyone else can hate cancer. I don’t. Everyone else can be afraid of cancer. I am not. It is part of me. It is my companion. I live with it. It’s inside of me. I have an intimacy with cancer that runs deep.

You may have a strong opinion after reading this. Think about how that strong opinion comes through your own lens about how you think you would handle breast cancer/how you have handled breast cancer.

We all respond to cancer differently.  Our response depends on our own values, how we have responded to crises in the past and our toolbox of resiliency. Cancer is terribly personal, so our response is personal too.  In my exceedingly vulnerable state of being a cancer patient, I only became more myself.  I was not a best case scenario.

This comes to the thesis of this essay: because we are all different, we all do cancer differently.

When I first got diagnosed with breast cancer, I spoke to many women who had a cancer experience. Each of them told me different things: put your head down and get through it, f*ck that sh*t, be strong, endure so you can get back to your life, here’s your chance to go vegan, etc. Each had formed their own cancer philosophy which had evolved over time.

The only thing many of them had in common was the further away the woman was from her cancer experience, the more she wanted me to just put cancer in a box and forget about it, because that’s what she had done.

I lean towards Audre’s outlook instead.  She talks about, (having) survived cancer by scrutinizing its meaning within our lives, and by attempting to integrate this crisis into useful strengths for change. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a waste of the cancer. But then that’s just me. Not everybody feels that way and that’s okay too.

My response to having breast cancer was very Sue. I searched for kindness and compassion from my family, friends and health professionals because that’s what I’ve always done, for my own reasons. I’m all about the soft stuff, so naturally I looked for it when I got cancer too. I struggle with fitting in and belonging, so I tried many support groups, outlets and cancer supportive organizations before I found my fit. I grapple with self-worth, so any rejection by family, friends and health professionals devastated me.

I’m a reader, so I read a lot in an attempt to understand how cancer feels.   I’m a writer so I wrote about it for many reasons – to bear witness to myself, to offer constructive feedback, to say thank you, to bitch and moan, to collaborate, to heal myself.

I bristled against certain cancer words to describe myself (survivor, warrior) before settling on the neutral breast cancer haver. Now I am a woman who had breast cancer which is apparently gone now but has a 10% chance of coming back. That’s a mouthful but one word doesn’t sum me up. Mostly you can just call me Sue.

And finally, my paid work has been in patient experience, so this lens is particularly strong. I was tuned into every aspect of my experience with health care – from how appointments are booked (archaically) to bedside manner (a mix) to the waiting room environments (mostly crappy).

I’ve included my favourite GIF at the top of this post. This is where we lift each other up – even if we don’t look or behave exactly alike or have the same diagnosis. Let’s give each other permission to be sick – and live life – exactly as we want to, without fear of punishment. When a friend or family member or patient gets cancer, it is not about you. It is about them.  Let them live own their story without your judgment.

What meaningful patient engagement looks like

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Last week, I was the recipient of meaningful patient engagement, thanks to the fine folks at Alberta Pharmacists’ Association and the Alberta College of Pharmacists.  I was invited as a patient rep to their two day Strategic Planning Retreat for the pharmacy profession in Alberta, held in Edmonton.

I want to deconstruct my experience to demonstrate how to do it right. Now, keep in mind that every time an organization engages patients, it is going to look different, because all organizations are different and so are the people who they engage.   But here’s a pretty awesome case study of best practice.

  1. I was contacted six weeks ago by Jeff Whissell, the Director of Pharmacy Practice at the Alberta Pharmacists’ Association.  I know Jeff well, for we’ve co-presented before at conferences – me as the ‘patient’ and Jeff as the ‘pharmacist.’  What is important to note that we also know each other as human beings.  We’ve met for coffee many times in our presentation prep, and I know he’s an all round great guy.
    LESSON:  Be vulnerable and brave enough to build real & mutual relationships with the people that you are engaging with. LESSON:  Give patients lots of notice.  We often have to rearrange work schedules, set up child care, and otherwise reorganize our lives to participate in your opportunity.
  2. The ‘ask’ clearly indicated what expenses would be covered, and a reasonable honorarium was offered.
    LESSON: Logistics matter. I think it is really important that patients not be out of pocket for expenses and the guidelines are clear around what expenses are covered and what are not.  LESSON:  Show that you value the work that they do.  Being paid the same as the board member honorarium was greatly appreciated – it was an acknowledgement of lost wages, and an indicator of the value of the work that patient representatives do.
  3. I had a number of email interactions with the organizers before the session.  By the time I arrived I had an agenda, directions to the building the retreat was being held in, and information about parking.
    LESSON:  Preparation matters. Don’t assume that patient reps know exactly where they are going like you do.  Check in with them to see if they have questions, and send on clearly written directions. These little things mean a lot.
  4. When I arrived in the midst of Edmonton’s first snowstorm (!), a friendly staff member was at the front door of the historic event building to assist with way finding.  Coffee and breakfast awaited the participants, and I was greeted when I first walked in the room by Jeff and their Executive Director.  There was prearranged seating and name tags, which helped with the awkward ‘where should I sit’ dilemma.
    LESSON:  First impressions mean a lot. A warm welcome sets the tone for the rest of the engagement.
  5. This was a group of about 30, and we broken into small circular tables of 8, which helped with getting to know one another.   I was seated beside Jeff on the first day and then was released on my own for the second day.  These seating arrangements were especially well thought out.  The facilitator was an experienced organizational coach and led the group through round table introductions and ice breakers each day.  I like to collect ice-breakers for my own work – the first day was ‘name, professional success this week, and personal success this week.’  The next day was ‘name, one word to describe your role and one interesting fact about you.’
    LESSON:  I cannot overstate the value of introductions and ice-breakers, particularly for those who might be new to a group.  This stuff might sound corny, but it really works to help us ‘get out of our business card box’ (as Don Winn, the facilitator said) and see each other as human beings.
  6. I was in a room of health professionals – mostly pharmacists, some administrators, government people, nurses and physicians.  I was the only ‘community’ rep, as the mom of a child with a disability. My pharmacist friend Jeff helped, encouraging me to speak up in the bigger group with a glance, or a smile or nod.  Twice he introduced a patient-centred concept and asked if I wanted to add to it, helping with the confidence I needed to appropriately speak up.  The last small group session he asked if I could present our points to the bigger group, but both Jeff and my other team member Ali supported me by taking notes, and answering questions when I got stuck.
    LESSON: It can be tricky to find your voice in a strange group.  You have to figure out when to speak up and when to shut up.  It is a bit of a dance while you first encounter the group dynamics.  I knew I was there to bring value, and that I wasn’t supposed to sit there silently.  But I also knew I had my own agenda to add the patient perspective, so I had to pick and choose my spots without being too aggressive or pushy.  Having a supportive friend who knows the group well really helps.  Jeff created space for me so that I could chime in at the right times.
  7. I was thanked at the end of the two days by all the leaders of the session.  I really appreciated this.  Jeff and I met afterwards for a debrief, and he shared his gratitude for my contributions.  “It wouldn’t have been the same without your voice,” he said – true words of a champion for patient partnerships in health care.
    LESSON:  Never underestimate the value of a thank you. Speaking up in a room of smart and experienced health professionals can be intimidating, and it was reassuring to be told of the value of my experience and perspective. LESSON:  Debriefs are awesome because they help ‘close the loop’ after an engagement.  It is a nice check-in with the patient rep to see how they are feeling about the session, and a great way to express both gratitude and feedback.

“Having a patient in the room keeps you honest,” said Jeff.  “You helped us focus on what is important.”  I look forward to seeing the final version of the Strategic Roadmap that will be released in February.  

Once again I tip my hats to pharmacists, and champions like Jeff Whissell, Greg Eberhart and Margaret Wing, who are smart enough to know what they don’t know, and are open to bring in people like me so they have a full perspective of the health care experience.  Engaging patients takes extra work.  But I truly believe in my heart that it is well worth it.

Involving people who you actually care for and serve prevents the typical navel-gazing that health care is so famous for.  Let us help you to think outside of your business card box.

10 Ways Patient Engagement in Canada Smacks of Tokenism

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Thinking of engaging patients in your health organization? Here are ten proven ways to engage patients in a tokenistic (and not meaningful) way.

1.  Invite patients to your focus group. I despise the term focus group.  These words imply that patients will be engaged once and only once, probably late in the process, and their suggestions will likely be discarded. Highly paid consultants with expensive shoes often facilitate these sessions. I also call this the tick box phenomenon.

SOLUTION: Invite patient representatives to regularly occurring meetings, not just one-shot focus groups. Strive to communicate updates with them regularly, and sincerely ask for feedback that you seriously consider and incorporate. (Engagement is not just one-way communication – it needs constant dialogue and collaboration).

2. Assume that staff who work for consumer organizations are patients. I call this the professionalism of patients, and I witnessed this in Australia when I was there three years ago. I sat on a patient panel of 5 people, where I was the lone patient. Everybody else was a paid staff member of a consumer organization.

SOLUTION: Consider the purity of the grassroots patient voice. Staff representing patients always have a bias towards their organization’s agenda.  Think about how you define ‘patients.’

3.  Have your corporate executives, clinicians and researchers speak on behalf of patients, or be the lone voice talking about patient engagement or patient centred care.

SOLUTION: Don’t do this. Ever. If you are doing this, stop it immediately. It is exceedingly insulting to all patients to speak for them and not make space for them to speak for themselves. This totally smacks of tokenism.  At the very least, consider partnering with a real patient in your patient experience presentation.

4.  Ask patients to over-volunteer. Have only a handful of patients that you continuously call upon, and expect them to show up at your organization for meetings numerous times a week.

SOLUTION: Your network of patient volunteers should be high in numbers so you have great capacity. Create sustainability in your volunteer pool by equitably sharing opportunities so patient reps don’t experience burnout or bitterness.  Consider going to the patients on their own turf – in their own homes and communities, and do not always expect them to come to you.

5.  Hire a paid patient representative to speak on behalf of all patients, in all forums. The n = 1 model of representation is not diverse. Having one person present to health audiences, be the patient voice on committees, speak on behalf of all patients, is just plain wrong.

SOLUTION: Having a paid patient staff member is awesome. But it should be that person’s role to engage more patients and build relationships, not to be the lone patient voice in the organization. This builds sustainability and allows for diverse perspectives.

6.  Host a Patient Engagement Conference without any patients. (YES THIS HAS HAPPENED). Or, fly in a celebrity patient speaker from another country to deliver the opening presentation and pat yourself on the back for being so darn patient centred.

SOLUTION: See #3. Nurture your local talent pool of patient speakers. Yes, this might take some work. But coaching and supporting patient speakers who have experience close to home will create a more relevant and engaging experience for your audience.

7.  Invite patient speakers to your conference or educational event. But don’t offer to pay for their time, expenses or registration. Pay all other speakers a fee and reimburse them for their time and expenses.

SOLUTION: Show patients that you value their time and wisdom as much as health professionals by not expecting them to be out of pocket for anything, and consider offering a reasonable fee to cover their time.

8.  Ask patients to sit on your Advisory Council, but when they have constructive feedback you don’t like, ignore that feedback, don’t address what they have to say, and silently pave the way for their bitter resignation.

SOLUTION: Patient reps aren’t cheerleaders. Expect to hear feedback that you don’t like, and respect that feedback by listening to it, responding to it, and collaboratively making a plan for how things will improve in the future.

9.  Invite patients to participate in your organization but expect them to show up on short notice, with no prep beforehand and no debrief afterwards. Give them an obscure room number and expect them to find their own way. Don’t pay for their parking. Don’t introduce them when they arrive in the room.

SOLUTION: Patients have families and lives. Give them lots of notice for meetings, and options to choose from so they can arrange childcare and take time off work. Patients are sometimes not well themselves. Plan for that by having a back up strategy (perhaps 2 patient reps, not just one). Extend courtesies to them. Pay for their parking. Meet them in the lobby and take them to the meeting room. Facilitate round table introductions when they get there. Take them for coffee afterwards to debrief.

10.  Patients are paraded in the ‘tell their story’ without any direction or coaching.

SOLUTION: Recognize that patients are sharing personal and intimate stories about their health with strangers. Honour the patient story by providing a listening ear, information about the audience, direction about key messages and tips about public speaking. Support patients for success, not for failure.

FOR BONUS POINTS:

11.  Wait until your organization has all their ducks in a row before you engage patients.

SOLUTION:  You will never ever have all your ducks in a row.  (Patients know this reality better than anybody).  The time to meaningfully engage patients in your organization is now.