Challenges Encountered in Identifying Patients as Potential Partners:

  • Engage only with patients who reinforce your policies, practices & beliefs. Patient engagement that doesn't challenge what you're doing & how you're doing it is meaningless. (And no, you're most definitely not just 'already doing everything right'.) (@alexhaagaard)
  • Listen only to #pts who will agree with everything you say. (@couragesings)
  • ‘We want to work with #pts* & do #ptengagement’ *Not #pts that have any health issues though because...deadlines.…(@couragesings)
  • Invite patients and families to community updates about research and care, but only recruit patients as participants in physician-led studies. Why not ask for patient ideas for research, and offer seed funding (@DrMWeiser)
  • Don’t post opportunities for engagement openly (like it’s a secret society). Ensure only people who “know someone” get involved or recommended. (@graceCordovano)
  • Patients don’t really care about their medical records, their experiences, the details of their insurance. Patients are consumers. (@graceCordovano)

On Identifying the Right Number of People to Engage:

  • The question we always asked in education: Who isn't here? When you have the answer, you need to find out why and then fix it. (Love that we're now writing the 'how to' checklist!) (@BCampbellDuke)
  • Diversity of #pts is so important! One #pt cannot represent ALL #pts, but can certainly share their own experiences. (@couragesings)
  • Find a diversity of voices to learn how best to improve. Ensure #pts have support & orientation to the committee & clear expectations. (@couragesings)
  • Or only using the same 'chosen few' #pts again and again. (@couragesings)
  • It’s so important to have at least 2 #pt partners participating. (@couragesings)
  • One voice can be scared into silence. One voice can be ignored,marginalized. One voice can't speak for all patients. One voice is the definition of tokenism. (@DeborrahS)
  • Have several Pts or PWLE at the table, not one solo voice. (@DeborrahS)
  • Having only one patient in the board or only one patient who shows up. We need allies. (@dianapoulsen)
  • Include only 1 patient (to check off the box). (@graceCordovano)
  • Have a patients panel with only one patient in the panel of 4 (don’t forget to add #caregivers to the discussion too!) (@thePatientsSide)

Never Say: "We Are ALL Patients" / "I Know Patients Because I'm a Doctor":

In response to the "We are all patients" statement, discusses what a patient is and is not, and how healthcare providers do not fall into the "patient" category. (@HeartSisters)

  • Never ever say “we are all patients” to a patient who has been harmed in Healthcare. It is definitely a #HowNotToDoPtEngagement No no. (@BrianDonnaPenn1)
  • There are so many #pts working behind the scenes to help improve healthcare whose faces are unknown, they aren’t in the pics on your timeline and go unrecognized. Please see these people. Value them. And orgs who think they are doing #PtEngagement because they’ve found ONE #pt to do all the things, sorry, but that’s #HowNotToDoPtEngagement. It seems if one healthcare org finds *the #pt of the year,* other orgs then also want this same #pt at their event. Seriously people. More than one #pt exists. (@couragesings)
  • It's not the same experience for a #pt outside the system living with #chronicillness b/c of privilege that comes with working within the system: knowledge, personal connections, health literacy & more. (@couragesings)
  • Again, this is not saying those within system can't be #pts, but is saying equating the experience in an attempt to show 'we're all the same' is hurtful. (@couragesings)
  • At a workshop, do a group exercise with the people at your table about a new initiative. Ask everyone to think from the #pt perspective. Doesn’t matter if they are not a #pt. (@couragesings)
  • Oh, and please use the phrase, “We’re all #pts.” (@couragesings)
  • Saying 'we're all #pts,' can be very hurtful to #pts with chronic illness so it's best to avoid this phrase. (@couragesings)
  • During your meeting, forget you have #pt partners on your team; start sharing what you would think...as a #pt. (@couragesings)
  • "I know what #pts want. I work in the system as a HCP." (@couragesings)
  • Thou shalt not use the phrase "thinks like a #pt!" when one is not a #pt! *facepalm* (@couragesings)
  • Working in system gives privilege, connections, health literacy & more #pts outside system do not have. Why it's so important to partner *with* #pts. Our experiences are quite different. (@couragesings)
  • Start your meeting with the decree “We are all patients!” (@graceCordovano)
  • “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)
  • Interesting though the use of the term patient, which in someways seems to be part of a paradigm which perpetuates a power differential between people accessing healthcare and people providing healthcare (@TimothyKariotis)
  • Doctors bring a necessary perspective to health innovations, but it is a different perspective from that of a patients. We can't improve the #patientexperience if we don't understand it. We need to stop guessing and start asking - patients are savvy! (@savvy_coop)

Caregivers and Care Partners are Important, Too!

  • Have an organizational #PatientEngagement committee that doesn't include any patients or family caregivers. (@GERONursing)
  • Forgetting to include #carepartners. (@graceCordovano)
  • Call me, a family #cancer caregiver an "informal" caregiver...nothing "informal" abt what I do 24/7. (@hedy_wald)
  • Talk to the assumed caregiver of the disabled patient as if they weren’t there. Instead of like asking your customer directly. “Is she in pain?” Doctors seem confused about the difference between their blind and deaf customers. (@Unuhinuii)
  • "Parents don't know their child's history" - goes on to tell me surgeries my son did NOT have but refuses to change EHR to include the ones and the dates he did have. I know every surgery and cath - all 26 of them, the pressures, the mm, what was done (@ZakkisMom)

It's equally important to involve youth - not just the parents:

  • Engaging only parents in the feedback process limits youth's voice and ability to self advocate and grow to share their diagnosis. (@BantingJennifer)
  • Ignore pediatric patients in exam rooms, only addressing their parents/legal guardians. Bonus points for concurrently staring at the #EHR screen. (@graceCordovano)
  • Talk to my mom instead to me (@morgan_gleason)