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.

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