Doing Patients Included Conferences Right

Of the conferences I have been to with Patients Included designation for conferences, there are some that have stood out above others for their true commitment to including patients in conference proceedings.

Content

Sometimes content at medical conferences can be very difficult to grasp for patients not working in a medical field. I have been to events where “HTA” was thrown around—which stands for health technology assessment, by the way—without explaining what that even meant. (Two conferences into this term, I still don’t know what it means).
Content needs to be accessible to patients—I spoke with an organizer for the last conference I was at who had seen my tweet about all the acronyms in use, and she said they had an acronym “cheat sheet” last year. This is a great idea to make content more accessible to patients!

Patients as presenters are also extremely important. While it may be difficult at some conferences to get a patient on every panel depending on content, this is a solid move conferences can take so presenters remember that not only are their patients in the audience, they’re speaking directly with one, too!

Patients Included Spaces: Above and Beyond

While a basic level of accessibility is required for Patients Included designation, some conferences go above and beyond.

Many conferences are starting to include Wellness Rooms or Quiet Rooms in their layouts. This provides all delegates a space to relax in a quieter environment but can be especially important for patients depending on their medical needs. The Wellness Room at Stanford Medicine X in the past has featured lounge chairs and blankets, and also provided meditation apps, portable snacks, water, and items that may be needed by patients or other attendees like glucose tablets, over the counter pain relievers, first aid supplies, and so on. At a recent conference, a Quiet Room was available with chairs and water throughout the day—not as robust but still very appreciated by some, I am sure! (I didn’t use this space.)

In past years at Stanford Medicine X, ePatient delegates had access to the front two rows of seating in the plenary hall. This made it easier for patient and caregiver delegates to connect with one another and helped with accessibility needs of some patients. We also had a separate ePatient/“VIP” lunch room, allowing for a less chaotic lunch experience and a place to sit while eating, and connect with other patients. It’s a seemingly simple touch but these things help a lot!

For those of us with asthma, as well as some other medical conditions, scent-free spaces can help us a lot. Having a scent-free policy can help minimize risks, but in the event that doesn’t quite work out, having a “scent free viewing area” (that is also free of flashing lights and at a lower volume to help with additional sensory or trigger-avoidance needs!) can prove helpful as well—again, it’s the “little things”.

Meals That Work for Everyone

As well, it’s becoming more commonplace, but for delegates with food allergies or restrictions, having food labeled with common and reported allergens is a great idea. Ensuring cross-contaminants stay separate is appreciated to make delegates feel safer eating buffet-style—boxed lunches can also help for those with dietary restrictions. It can also help to have a menu available in advance, so delegates can decide if the menu will fit their needs and bring a meal, if needed.

Patients Included: Doing it right

Bringing patients into the room is a great start, but it’s not all you can do. These are just a few things that can be done to help patients be included to the best possible level—other suggestions are having an accessibility survey to assess attendee needs, doing an accessibility scan from the vantage point of attendees using mobility aids or other assistance, and providing a “tour” of the space digitally (a PDF of photos is quick and easy!). Simply: ask your participants what they need!

Have you attended a Patients Included conference? What stood out to you as making your experience outstanding?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

Poll