What meaningful patient engagement looks like

pharmacy retreat
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.

living in defiance of the so-called ordinary


Two young ladies rang our doorbell at dinner time on Sunday night. We were expecting them – they were UBC Medical Anthropology students, interviewing us for a paper they were writing about the experience of living with a person with a disability.  My husband and I live with a person with a disability.  That would be Aaron, age 12 & pictured here, our youngest son who happens to have been born with Down syndrome.

I fear these students got way more content than they were looking for.  I’m sure they are still transcribing our 90 minute conversation, which was a mix of ranting, arm waving, preaching, storytelling, tears and love.  I hope they didn’t walk out thinking:  gosh, having a child with a disability really makes you fall off your rocker.  We are still on our rockers in this house, and in fact, we are standing on them, proud and tall – saner than we’ve ever been.

Before I had Aaron, I had NO IDEA.  I had NO IDEA about the pain of witnessing a child being excluded and struggling to find belonging.  I had NO IDEA what it felt like to be stared at, ignored or ridiculed because you look different than everybody else.  I had NO IDEA how most of society has not evolved, is stuck in caveman days, tribal and terrified of ‘the other’.  I had NO IDEA I should have purposely taught my older two kids about kindness and compassion, about standing up for the underdog, and about the importance of conducting oneself with absolute integrity.  (Thankfully, their little brother came along when they were 7 and 10 – and he taught them those values himself).

I was woefully ignorant before Aaron.  As an entitled, educated, well-off white person, I had NO IDEA what it felt like to be discriminated against.  But now I know, at least vicariously, because I love someone who experiences exclusion and loneliness every single day of his life simply because he was born different.

When Mike and I answered those young ladies’ questions, we shared stories about our struggles with systems, being denied respite & childcare, fighting against IQ testing, standing up for our son, digging deep to build him a community of friends, and how it feels to walk home with him from school and to have not one kid from his class slow down and say hi to him.


This pain is deep, but it does not come from Aaron himself.  Aaron is but a human being.  He is flawed, yes, like the rest of us, but he also contains an infinite amount of joy and understanding about what’s important in life. (Hint:  it is the little things, folks).  I did not understand how precious life was before Aaron came along.  He taught us that we must celebrate every single moment, for this is all that we have.

We told those students about this intangible stuff too. You can’t see it, but it is real, and it is based in love. We told them that most people love their babies NO MATTER WHAT and what if they had a child and they had a phone call when he was 6 years old and found out that he was hit by a car and had a brain injury, would they STOP LOVING HIM?  Of course not.  In my ranting, I was reminded of this wonderful quote from Ian Brown:

Disability is inherently radical, lived in defiance of the so-called ordinary. – Ian Brown, Facing Difference, The Walrus, May 2014.

Aaron’s very life is radical, but by openly loving him, by bringing him into this world and daring to be happy, we are leading the revolution.  How much longer can people with disabilities be denied childcare, government funding for therapies, education, love, meaningful employment, and decent living conditions?  How is this OK with any other group of people?  (Answer:  this is not OK, at least not here in Canada – except for individuals with disabilities).

I hope that’s what those young students heard when they transcribed our many words from our interview for their paper.  I hope they realized that the important stuff (and people) in life are worth fighting for.  

Every day, Aaron shows us that life is not black & white.  Life, in fact, presents in glorious colour, and with that comes deep pain, but also profound love.  We are supposed to feel all of this, all of the joy and all of the pain, to prove that we are alive.  Aaron is who he is, and that’s simply enough.

remembering henry

poppiesLong ago, when I was twenty and still in university, I worked in a Veteran’s Home as a Nursing Attendant. I’d often work mornings helping the staff get the men up and ready for the day – and then run across campus to my English class, dressed in my nursing uniform and white nylons.

I’m remembering that experience today. Nursing Attendants are true bedside workers. We were the ones who worked directly with the gentlemen on the nursing unit – many of whom required extensive care. We cleaned up things that the housekeeping staff wouldn’t touch. But we also had the luxury of time to spend with the veterans, as we helped them get dressed, or patiently helped feed them meals.

Nobody talked about the War. At the time, there was even a World War I veteran at the Vet’s Home – but there were many veterans from World War II and Korea. While the war was in the distant past, it lived with these men every day.  These were just ordinary men who had found themselves in terrible circumstances. The scars from those war-time experiences often were manifested in estranged families, whispers of abusive behaviour and alcoholism. I remember helping men to bed after their return from the Legion, reeking of whiskey, and slurring their words.

But that wasn’t the whole story. The wars had affected a cross-section of the population of men, and there were many dignified, lovely residents at the Veteran’s Home. They enjoyed the company of the young nurses who where there to support them, and many of them reminded me of my own grandpa. It was important for the staff to remember that these ‘residents’ were also fathers, granddads, brothers and sons.

There were many stories of kindness at the Vet’s Home. My clearest memory was one winter, when I was working nights. On night shift, there was a lot of sitting around at the nursing desk, waiting to respond to call bells. Every few hours we would have rounds, where we would quietly walk through the unit, checking on the men, emptying urinals, and turning those who were immobile so they wouldn’t get bedsores.

One night, my patient assignment included an elderly man named Henry. He was in the last stages of life, and his breathing was increasingly noisy and laboured.  He had no family or friends to visit him in his final hours. After our first set of rounds, I excused myself from the desk to sit beside his bed.  Henry had yelled and sworn at me in the past, but all that didn’t matter now. His hand had paper-thin skin, and I held it softly through the wee hours of the night. It was a long shift. When I left at 7 am, I said a quiet good-bye and gave him a gentle kiss on his forehead.  I did not look back when I left the room.

I read Henry’s obituary in the paper a few days later.

I learned many things from working at that Vet’s Home. One was to duck fast if something was being thrown at you.   My other realization was that health care is really about acts of kindness.   And that no man should ever die alone.

Lest we forget.

(I wrote this two years ago, and republish it every November 11).

guy dancing with his shirt off video

When I’m feeling despair about the state of my world, I comb my library for inspiration to keep me going.

This Derek Sivers video on leadership is a great resource, and I’ve shared it widely with people who are trying to make a dent in the universe.

I call it: the guy dancing with his shirt off video.  When I worked for the Stollery Children’s Hospital, we showed this video at our Family Centred Care Strategy Day.  There had been a small group of us dancing with our shirts off for three years (sorry, the analogy doesn’t carry well over to women, unless you are at Oregon Country Fair) and the movement of family centred care was slowly starting to spread within the hospital.

Today the Stollery is a role model for family engagement and a leader in family centred care in Canada.  But we must not forget this has come with a heck of a lot of work by a lot of people, including the first adopters, who risked appearing foolish by dancing on that hill.  But dance they did.

I’m really posting this video for myself, to remind myself to keep on going. Today I had the honour of presenting about partnering with patients and families to an exceptionally engaged and respectful audience of Pharmacy leaders from the Lower Mainland.  It reminded me that those champions are out there, and gave me hope for the future.  Let’s shimmy ahead together in spite of despair.  That’s the only way change is going to happen.

ps:  more practical advice to soothe your despair:  eating Cheetos out of your kid’s Halloween candy helps too.  As do Disabilitinis.

all that dread for nothing

I still think this is a good idea.
I still think this is a good idea.

The dread started when I received the slip home from Aaron’s school about his first IEP meeting.  It said:

___I will attend my child’s IEP meeting on Thursday October 29 at 3:05 pm
___I will not attend my child’s IEP meeting.

How’s that for choice?  Then started my bad mood, my grumbling and general poor disposition about this impending meeting.

After a few days immersed in dread, I realized that my attitude was everything.  At my work, I often talk to families about communicating with professionals using a positive approach.  I use this quote:

“A prickly personality can advance a magnificent cause, but why make it harder?”

I could walk in all pissed off about the lack of choice in the date, or I could take care of myself, connect with others for support, and walk in with an open mind.  I decided to adjust my standard:  if the educators assembled seemed to care about Aaron and his learning, I would put aside any preconceived notions and biases based on how the meeting was scheduled.

I confided in a few friends about the IEP meeting.  It helped to talk about it with others.  I made sure I went to yoga class at work at lunch time.  Our instructor was kind enough to adjust her session to centre on relaxation and calmness, I left feeling serene.   I carried this feeling into the IEP meeting.

On my way home, I stopped at Starbucks and picked up a (dirty) chai latte, which served as my crutch during the meeting.   (Sounds silly, but clutching that coffee was a comfort to me). I kept my work clothes on to help with credibility.  It seems ridiculous that I feel I have to do this, but I think it helps.

My husband, Mike, (perhaps the most rational man on earth) was there with me.  Showing up as a team helped feel not so outnumbered, and we served as moral support for each other.  Me a ball of emotion; Mike the voice of reason.

Mike said he had never seen me so calm for a school meeting.  I do usually cry (and that’s ok too).  I didn’t cry today.  I felt prepared, but not a bundle of over-prepared anxiety – which generally includes anticipating what could go wrong, what offensive things people might say and how I would respond.  I had prepared myself by doing what I could do to remain open-minded and to dump my biases before I walked into the room.

All the educators there were respectful and engaged.  They solicited our feedback and we felt part of the team.  They had pre-populated the IEP form, but adjusted it when we told them certain goals were and were not important to us (spelling – no.  printing – no.  keyboarding – yes.  reading – yes).

When we walked out, I felt respected and listened to.  Most importantly, I felt as if they cared about my boy and his learning.  And that’s all that really matters in the end.

All that dread for nothing (please remind me of this before the next IEP meeting in May).

do unto others

with kind permission from: https://championsforcommunitywellness.files.wordpress.com/2015/08/meaningful-engagement-4.png

The topic of patient and family engagement is HOT right now.

When I started this work ten years ago, the idea of involving patients and families at the organizational level in hospitals was new in Canada.  A rare children’s hospital might have a Family Council, but that was about it.  Now hospitals and researchers have awoken to the idea of talking to the people who they care for and serve.

This super infographic about Family Engagement was co-written with Karen Copeland, a family leader in the child mental health realm, and founder of Champions for Community Wellness. It is a solid summary for staff of what meaningful engagement looks like to families.

Last night, I had the honour of attending Isabel Jordan’s talk about Patient Engagement at Evening Rounds in downtown Vancouver. As the mom of a child with a rare disease, Isabel had many great suggestions about meaningful engagement of patients and families. Her wisdom included suggestions about involving patients in conferences (via the Patients Included movement) and closing the circle after engagements. She emphasized that patient engagement is really about treating people with respect. Plain and simple.

Last Sunday, the afternoon of the Canadian Family Advisory Network was spent talking about engaging families in pediatric research initiatives.  This means involving families early on in the research, and shifting the mentality from families/children being research subjects to being research partners.

This is a change in doing things TO or FOR patients & families to doing things WITH them.

I think this movement starts at the bedside or point of care, and with acknowledging that patients and families bring their own expertise to health care settings.  This means shedding the hierarchies that are rampant in health care, and for staff and physicians to stop hiding behind their professionalism and graduate degrees and to simply be human beings, plain & simple.

It means treating people as you want to be treated yourself.  It is about human connection.  It is about person to person relationships.  And this starts with listening.

Listening to each other’s stories without rushing, without judgment, without defensiveness, and without assumptions.  It is challenging work to be respectful listeners, because it means we have to examine our own values and understand where our own biases come from.  It is only then we can really listen to patients and families and work with them as true, equal partners in care.

If this sounds too soft, here’s a more practical article that was published in the Health Issues Journal in Australia called:  Meaningful Engagement or Tokenism.  Here, I open with a story about what tokenism in engagement looks like.  Then, I move onto practical solutions that includes ideas about:  scheduling meetings, preparing patients/families, welcoming people, flattening hierarchies, creative outreach and feedback loops.

Engagement is really about treating people like human beings – with respect & dignity and as equals to you.  There is no magic or secret sauce here.  Patient and family engagement is about doing unto others as you would have them do unto you.

it depends…

more conferences in quebec city please!
more conferences in quebec city please

I had the great honour of speaking at the Canadian Family Advisory Network (CFAN) this weekend.

I first spoke about Family Councils – in my experience, what works and what doesn’t work. I’ve posted my lessons learned list here. In the end, I concluded that the answer to the questions: should we have a Family Council? What should it look like? – is: it depends.

Then this morning, I had the great honour of sharing the stage with Christie Oswald, Sarah Topilko (from the Stollery Children’s Hospital), Rita Visconti (from SickKids) and Kate Robson (from Sunnybrook Health Centre) to share stories on a topic dear to my heart – peer support. I handled the ‘soft’ part of the presentation about the value of peer support, with Christie and Sarah presenting on Stollery’s Family Bedside Orientation Project, and Rita and Kate spoke about the important topic of celebrating families and babies in NICU environments.

What does peer support look like for families who have children with medical needs? The answer to that, too, is it depends.

There is not one answer to any of these questions. That is the challenge with this work. No one size fits all. There is no textbook answer. This is because you are working with human beings, and that in itself is challenging and demands flexibility.   People are snowflakes; we are all different, and not one of us are the same.

When I started to be involved in this national work seven years ago, the only people at a CFAN meeting were the families themselves. We were all preaching to the converted about family centred care. Zoom ahead seven years, and the CFAN meeting has considerably diversified – the room was full of families – both paid family advisors & volunteers – young adults, health professionals, physicians and administrators. Word about family centred care has spread beyond families. Let’s keep spreading the message of the power & value of the family voice.

What I like to say about CFAN is if you attend, you will laugh and you will cry. I had so many lessons from this powerful session.

“Joy is contagious,” said Kate Robson, talking about celebrating babies in the NICU, including having holiday parties with Santa and celebrating Halloween with families (hint – small babies can be fit into dog costumes).  Joy is contagious – what a powerful observation.

Some of my favourite take-aways included the notion that just because a program ends, doesn’t mean it is a failure. Not all families are extroverts – and perhaps they don’t want to participate in parties or other social events in the hospital (but some do) – maybe they just need quiet space with beauty and art instead. What dads need for peer support and what moms need can sometimes look very different (hint, not all dads like to bond over sports and beer. But some do).

Again, what should peer support look like? The answer is: it depends. The most important thing is that we remain open-hearted to different ideas and avoid judgments and assumptions. When you are starting up something new, give up on the idea of ‘perfect’ and move towards ‘good enough’. Do not give up. Try again. Do not get so focused on numbers – making a difference to one person is enough.

In the end, our panel discussion was not an expert panel discussion. We had no answers for the audience. The fact is that we do not have the answers. The answers all reside inside of you. You know in your heart what you have to do.