Good4Patients: #HowNotToDoPatientEngagement

It’s completely understandable if you feel some trepidation about opening the recent Twitter thread, #HowNotToDoPtEngagement. The hashtag was started by @couragesings, a Canadian patient advocate, and quickly took off, swelling with brutally candid contributions from other advocates around the world. The long list of ways NOT to “do” patient engagement is frequently cringe-worthy; it is highly likely that some items will be all too familiar to those of us who work in patient engagement. Worse yet, we may even be guilty of having done some of these things ourselves.

Here are just a few of the observations from patient advocates on what not to do:

  • “Schedule a focus group to get feedback from parents of kids with illnesses. Run it at 9am during a weekday when your target group is working. Say you tried to engage with parents” —@couragesings
  • “Pay for doctors to speak at conference but do not pay for patients to speak at the conference” —@ThePatientsSide
  • “Send all meeting invites through Outlook. Do not ask #pts if they have an Outlook calendar.” —@couragesings
  • “Ask patient/org for letter of support for grant application – it’s the first time they’ve heard of the project and you need it back in 48 hours” —@researchgirlca
  • “When doing introductions, ask everyone for their name & what they do for a job. Especially impactful for those #pts unable to work: helps them feel inadequate in a room full of professionals.” —@couragesings
  • “’I know about patient experience. I’m a doctor and I see patients all day.’ So, I guess I know all about doctor experience because I see y’all all day?” —@miShouldTalk
  • “Do not ask us to share our #story as part of a meeting/reason for our being at the table. Our #livedexperience will be conveyed in our contributions.”— @GailBellissimo
  • “When hospital staff presents a new initiative/program to patient advisors after it has been developed asking for feedback (i.e. rubber stamp)” —@ShariBerman68

But take heart! In classic (and classy) patient advocate style, @couragesings came back and asked for folks to offer solutions under another hashtag: #HowToDoPatientEngagement. This one is also full of gems—free advice, insights and resources from the people we should be listening to in the first place.

We can do better. We HAVE to do better. Advocates have told us what to do…and what NOT to do. So let’s start by paying attention.

Twitter user Bryn Robinson (@brynphd) pulled together all the suggestions under both hashtags in an incredible, evolving Google Docs spreadsheet. Access it here.)