This past week, I was in Las Vegas hosting the 2023 Healthcare and IT Marketing Conference (HITMC23). It was a successful event, but we could have done more for the patients who spoke. We missed an opportunity to highlight them and to involve them in the planning process. As an organizer I should have known better, but we ended up treating our patient speakers no differently than everyone else…and that was our failure.
I am ashamed.
I thought we could discuss patient involvement in healthcare conferences on the next HCLDR tweetchat. Join the community at 8:30pm ET on Tuesday February 7th (for your local time click here) when we will discuss the following:
- Q1 Patient speakers are not made of porcelain, but they do have unique needs. What accommodations should conference organizers consider providing?
- Q2 What ideas do you have for conference organizers to better promote to attendees, highlight, or bring attention to sessions that include patients?
- Q3 Patients are often asked to share their patient story with the audience. How can this be done in a way that does not feel like the conference is exploiting that story or the patients?
- Q4 In the next 12 months, what topics do you think patients are uniquely suited to speak about and should speak about at healthcare conferences?
Owning Our Mistake
One of the core principles of the HITMC Community is being vulnerable. If we don’t do this, we can not learn new things. One way of being vulnerable is owning up to mistakes. I made a mistake by not paying enough attention to our patient speakers at HITMC23.
The session was organized by Adam Johnson @RareDiseaseDad, who is one of the most warm-hearted person you will ever meet, and featured three other courageous patient advocates/caregivers:
- Grace Vinton @HITeaWithGrace
- Kristy Dickinson @SimplyKristyD
- Effie Parks @OnceUponAGene
Kristy is fellow Canadian who lives down the highway from me and is a regular participant in the HCLDR tweetchats.
I feel that I failed all three of the panelists – Kristy, Adam, Effie and their moderator Grace in multiple ways:
- We didn’t do anything to help the panelists feel more welcomed at the HITMC23 event. For Kristy, Effie, and Adam this was their first time as part of the HITMC Community and we missed the opportunity to truly embrace them.
- Their session was scheduled as a breakout and was up against two other educational sessions that (in hindsight) were more tuned for the marketing audience in attendance. Because of this, their panel session was not well attended.
- We did not consider how much juggling of their personal lives each of the panelists had to do in order to be part of HITMC23 – child care, travel, etc.
I have been to the MedX conferences that were held back in the day, and I saw first-hand the gold-standard of how patients should be/could be treated at a conference. Unfortunately, none of those best practices made their way to HITMC23.
I am ashamed. I feel awful for Kristy, Adam, and Effie.
Despite all of this, the panel delivered an amazing session to a small audience:
As we kick off rare disease month, I am so in awe of the honor of moderating #hitmc’s first all patient/caregiver panel on the critical topic of involving the rare disease voice in what we do every day as #healthcare storytellers. BRB this group is sparking a revolution💡 pic.twitter.com/sj508xmhzP
— Grace Vinton (@HITeaWithGrace) February 2, 2023
Patients Included
Back in 2015, Lucien Engelen, published a Patient Included Conference Charter. It provided a guideline for conference organizers to incorporate patients into their events as “experts in living with their condition while ensuring they are neither excluded nor exploited. The charter had 5 basic clauses:
- Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
- Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
- Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
- The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
- Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
To receive a “Patients Included” designation, conference organizers must adhere to all five clauses. However, even if a conference was not seeking this designation, the clauses above are great suggestions for involving patients.
The question I would like to ask the HCLDR community…what specific things do conference organizers need to do in 2023 (and beyond) to be more accommodating for patients? Is travel and accommodation enough? How can patient sessions be better promoted?
I want to make sure we do better in future events.
Special thank you to Joy Rios @askjoyrios for sitting down and making me aware of our failure.
References
“Patients Included Conference Charter”, https://patientsincluded.org/conferences/, accessed 5 February 2023.
Utengen, Audun. Et al. “Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Researchers”, Journal of Medical Internet Research, August 2017, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5579322/, accessed 5 February 2023.
Palmer, Barbara. “How — and Why — You Should Include Patients at Medical Meetings”, PCMA Convene, 18 April 2018, https://www.pcma.org/the-virtue-of-patients/, accessed 5 February 2023.
Iongh, A D and Giles C. “Patients and healthcare conferences: what does true involvement look like?”, BMJ, 10 March 2015, https://www.bmj.com/content/350/bmj.h1325, accessed 5 February 2023.
Hung, Colin. “Designing a Patient Friendly Conference”, HCLDR, 7 September 2014, https://hcldr.wordpress.com/2014/09/07/designing-a-patient-friendly-conference/, accessed 5 February 2023.
Image Credit
Photo by Grace Vinton at HITMC23: https://twitter.com/HITeaWithGrace/status/1621191806196289536
Photo by Luis Quintero: https://www.pexels.com/photo/photo-of-people-gathering-in-room-2833037/
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