A Lesson in Patient Inclusivity at Healthcare Conferences

The recent HITMC23 conference was a tremendous success, but as an organizer I felt I could have done more for the patients who spoke at our event. To address this personal failure, I asked for input and advice from the HCLDR community on Twitter on how we can improve. Ideas that emerged included: asking patients what accommodations they need while onsite, having a designated liaison for patients, and highlighting patient sessions at the opening.

A Personal Failure

Ironically, one of the hallway discussion topics at HITMC23 conference was marketing failures. I had several conversations with attendees about the failures we have each experienced and the (painful) lessons we learned. Little did I know that I would be learning more lessons right after the conference.

At HITMC23 there was a breakout session organized by Adam Johnson @RareDiseaseDad and featured three other courageous patient advocates and caregivers:

• Grace Vinton @HITeaWithGrace
• Kristy Dickinson @SimplyKristyD
• Effie Parks @OnceUponAGene

Here is how I felt we failed this panel of patients:

1. We didn’t do anything additional to welcome our patient speakers to the HITMC23 conference. For Kristy, Effie, and Adam, this was their first time at the event and we missed the opportunity to truly embrace them. Thankfully the people who attended the session were incredibly supportive and welcoming, but as conference hosts, we didn’t do anything special for the four patients who would be sharing their stories and insights.
2. Their session was scheduled up against two other educational sessions that turned out to be hot-button issues for the HITMC23 attendees. Because of this, the patient panel was not well attended.
3. We did not consider how much juggling of their personal lives each of the panelists had to do to participate at HITMC23 (ie: childcare, special travel arrangements, etc.)

I felt so badly that I wrote this HCLDR blog right after HITMC23.

Ideas for Improvement

So, how can we improve? During the HCLDR tweetchat on February 7^th, the community came up with the following suggestions:

1. Ask patients individually what they need while onsite. Don’t assume to know what they need and don’t use a one-size-fits all approach.
2. Have a quiet rest area where patients can go between sessions to recuperate
3. Designate a person that’s part of the organizing team, as liaison for patients pre-, during, and after the conference. That liaison should be empowered to resolve any issues relating to food, accommodation, transportation, etc. for patients.
4. Cover the cost of airfare, meals, and hotel for patients. Don’t make them pay with their own card and reimburse them later.
5. Choose an accessible venue.
6. Do not schedule their speaking session first thing in the morning because it may take patients more time to get ready or find transportation to the venue. Same applies to after lunch as some patients may require extra time to move from the lunch area to the session room.
7. A special registration rate for patients to encourage more to attend
8. Highlight patient speakers in the opening session and in pre-event marketing
9. Involve patients in the planning of the event. Not just the agenda, but the room layouts and food choices as well.
10. Paying for a patient’s caregiver to accompany them to the conference
11. For speakers that are caregivers, at the very least acknowledge their sacrifice for being at the conference. Even better, help offset any additional at-home costs they had to incur

While some of these suggestions are a derivation of the Patient Included guidelines, most of the suggestions are based on experiences of patients at other conferences.

An intriguing suggestion came from Geri Lynn Baumblatt @GeriLynn

Can ask other attendees to add $25 or so to help cover the cost for patient advocates. We know them being there makes the conf better & makes the conversation/info from the conf travel more widely https://t.co/gRcl1fMlLF #hcldr

— Geri Lynn Baumblatt (@GeriLynn) February 8, 2023

I wonder if making this an option at the time of registration, like the “round up” approach at some retailers, might be enough to help get a few more patient scholars to a future HITMC conference.

Another fantastic suggestion came from Fae Johnstone @FaeJohnstone

Some key considerations:

Do we have plans and strategies in place for if PPWLE (people with lived experience) face backlash for critiquing the establishment?

And are we preparing folks for the emotional toll of these kinds of talks, if this is their first experience? #HCLDR

— Fae Johnstone, MSW (@FaeJohnstone) February 8, 2023

I didn’t really think about how draining it can be to relive a trying/traumatizing experience, so giving speakers time to recover is something that should be baked into the schedule.

The backlash is wholly different challenge and one that I don’t have many ides on how to address. The MC for the conference or the moderator can help a little by acknowledging that some in the audience might be uncomfortable…but that’s okay. If anyone in the HITMC Community has ideas on this, please send them to me!

Acknowledgements

Thank you to the many people who contributed ideas and thoughts on how to improve the involvement and experience of patients at conferences: @SalemOaks, Amy Ma @Ctzen_Improver, Todd Eury @PharmacyPodcast, Stephanie Fischer @RarePOV, Ann-Marie O’Brien @StrongGirl51, Kathy Kastner @KathyKastner, PF Anderson @pfanderson, Sarah Greene @researchmatters, Chris Anselmo @Chris_Anselmo, Sandra Woods @SandraWoodsMtl, Matt Martin @MattBMartin, and Joe Babaian @JoeBabaian

Also, a big shout out to Adam Johnson for offering his words of encouragement:

Colin, I’m going to wear you down with these virtual hugs, my guy. I appreciate it & you. I also value the learning partnership we are embarking upon. 💚

And for the record, @SimplyKristyD & I might still be at the @MeowWolf if it weren’t for your help with my scooter. 😂 #hcldr

— Adam Johnson – DadVocate (@RareDiseaseDad) February 8, 2023

And to Kristy Dickinson:

T3b: For the record, I want to say that I felt valued at #HITMC. Our audience was very attentive and engaged and kindness flowed afterwards – and into tonight! #hcldr

— Simply Kristy (@SimplyKristyD) February 8, 2023

And to Joy Rios @askjoyrios for being brave to make us aware of the situation and who started the conversation on how we can/should improve.

I promise to reflect further on what happened at HITMC23 and will work to implement improvements ahead of our next event.