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.

2 thoughts on “What meaningful patient engagement looks like

  1. championsforwellness says:

    So many great things you have shared in this post Sue! I especially appreciated this: “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.”

    I have found that when I am in a large group of professionals for the first time, it is hard to judge which line to walk – how much to say, what not to – it’s a balancing act, because you want to maintain the opinion you are a credible voice at the table. But when we are ASKED, when we are provided with the SPACE to share, it changes things. He was modelling to the larger group that your opinion and voice mattered, and most importantly, he SHOWED you it did, simply by asking. Such simple questions to ask, but so incredibly meaningful.

  2. sue robins says:

    Great comment (as usual, Karen) – thank you. I have to say that Jeff is exceptional – but to him it is simple – he told me – I just think about what it would feel like if it was me…this is the KEY to understanding everything – and it comes down to empathy…and demonstrating understanding of another person’s perspective.

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