the secret sauce

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I often get asked how some health organizations are successful at meaningfully engaging patients while others treat patients as if they are expendable checkmarks on their to-do lists.

This weekend, I was reminded of the ingredients that make up the secret sauce for engagement.  I was invited to the Stollery Children’s Hospital for a reunion of the youth, families and staff who have been involved with their patient + family centred care movement.  I had worked there for four years as their Family Centred Care Consultant to help establish their Council and their Family Talks program.  (Of note, I moved to BC to do the same work and failed miserably here.  You can lead a horse to water, but you can’t make it drink).

This weekend, amongst my beloved former colleagues and friends, I had a great epiphany.  My lightbulb moment was this: I was struck by three value-based elements that are mandatory for any health organization or professional who aspires to put patients first.

1. Demonstrate integrity.

There must be an alignment of an organization’s professed values and their actual behaviour. If your mission statement says Patients First then the behaviour of your organization (through policies and processes) and the actions of your staff (this includes everyone – parking attendants to clinicians and Patient Engagement staff, especially Patient Engagement staff) must actually put patients first, every single time.

This means doing serious self-reflection on how you treat ALL patients and how you handle challenging feedback. You cannot roll your eyes at ‘difficult patients’ or ‘hysterical mothers’ or say that you are ‘babysitting families’. Or dismiss patient feedback or the stories you do not want to hear.

Also, the only people who can tell you if you are patient centred are the patients themselves. You cannot decide this for yourself so you can slap it all over your website like some sort of public relations exercise.

Integrity also means if you say you want to hear the patient’s voice, you have to make space for the uncomfortable stories and honour those who share them with you. Listen hard. Don’t turn away.  There is growth and learning in the discomfort.

2. Give up your power.

If you want to collaborate with patients in a meaningful way, you have to be willing to give up your power. While patients are exceedingly vulnerable in health care settings, we also aren’t stupid. At the bedside, you have to concede some of your control and do everything you can to minimize trauma and suffering. Plus, for God’s sakes, cease all practices that strip people of their dignity and stop treating patients like dumb rats.

If you want patients around your boardroom tables, then you have to actually make room for them at those tables and treat them as equals. That includes not pulling stunts like scheduling meetings last minute, having only one token patient and demanding that people volunteer their time.

When giving up your power, you also must admit that you can’t and don’t know everything. Believing you are the expert is the ultimate patient centred care killer. Put your ego aside.

3. Grant patients a voice 

Creating opportunities for patients to safely speak up and share their wisdom supports them to heal. It also helps them connect with one another to build their own communities and find belonging. Oppressing and dismissing stories or feedback harms patients. Ask yourself: do you want to heal or do you want to harm?

If you really want to put patients first, the first step is to sit down and be humble.

My heart was bursting at the reunion.  I felt like a proud grandma.  There are so many awesome families and staff who are now lighting the way.  Kudos to the Stollery for demonstrating leadership and integrity. Brava/bravo staff, youth and families: Heather, Christine, Karen, Michelle, Amanda, Sarah, Christie and so many others.  Put your head down and keep going. You are are the role models for this work in Canada, for both the pediatric and adult worlds.

Other centres? Pay close attention. They’ve set the bar high for you.

As Don Berwick says, take off your business suits and lab coats and join together with us patients and families.  In rigid health care systems, this demands an innovative mix of leadership, culture shift, behaviour change and alignment of stars.   If it isn’t uncomfortable, it isn’t disruptive and you aren’t growing.

Demonstrate integrity.  Give up your power.  Grant patients a voice.  That’s where the magic lives.

8 thoughts on “the secret sauce

  1. Carolyn Thomas says:

    Wow! Wow! And – oh, did I mention, WOW!!!?!!! Every word of this rings SO true, Sue. I was cheering out loud by the end of this important piece and those three brilliant ‘value-based elements’ of patient engagement you came up with. So simple, so common-sensical.

    I’m also feeling extremely pissed off (and apologetic on behalf of British Columbians) because your Family Centred Care Council and Family Talks role models at Stollery have not yet been borrowed by BC healthcare wonks here. WTF??!?! What on God’s green earth are they waiting for? Your phone should be ringing off the hook by now…

    Fingers and toes crossed that somebody in a decision-making capacity in this province will wake up – and snap you up – very soon…

  2. sue robins says:

    Amy, thanks for this. ‘Tis true that I’m talking attitude, which is much more difficult to adjust than knowledge or skills. I think some facilities are at a greater sense of readiness than others. There is some ‘stars aligning/luck’ that happens too.

  3. sue robins says:

    Carolyn! I knew that I’d return to British Columbia in tears at the state of affairs here. There just does not appear to be the leadership in either Children’s or Cancer that truly understands what PFCC/engagement really is. I’ve offered to meet with various directors of patient engagement, but I think I have a red flag on my chart for being such a health care big mouth, so there have been no takers. I’ve vowed to never work ‘in’ the system again, but I guess I should never say never. They are not in a state of readiness and think they know it all already anyhow.

    Just another comment about the Stollery – the folks there were careful to say that things aren’t perfect in any way and they are still learning. THAT IS THE KEY. They admit that they don’t know, and that they need patients and families working alongside them to find their way. Sit down and be humble.

  4. Sarah Topilko says:

    Sue, thank you for paving the way for all of us and empowering family members to share their voice in meaningful ways. I count myself lucky every day (even the hard days!) that I now have a career doing what I love best- helping families share those important perspectives and voices and helping others in the health care system see the value in inviting families to those tables.

    As always, you are incomparable.

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