Begging to Work for Free — Patient Advocates Speak Up

A tweetchat leads to an unprecedented, public discussion about the multi-faceted costs of patient advocacy and the concept of begging to work for free.

Hotel Points and the #BCSM Chat?

I was showing my colleagues at Symplur the deep analytics obtained via Signals for the 5/20/19 #BCSM (Breast Cancer Social Media) chat.

Trending Terms analysis for #BCSM chat 5/20/19
Symplur Signals Trending Terms analysis for #BCSM chat 5/20/19

 

I had been the guest-host for that chat.

They immediately asked why were we talking —a LOT — about hotel points on #BCSM. When I explained that the chat was about the costs of advocacy, and that it related to the concept of “begging to work for free,” their reaction progressed from their initial surprise to understanding, and ignited curiosity.

Familiar #BCSM Chat Topics — From Cancer Guilt to Medical Meeting Recaps

A quick look #BCSM over the years provides context to the initial surprise at the idea of “hotel points” as a trending term. Since its inaugural chat on July 4th, 2011, #BCSM continues to convene a multidisciplinary range of stakeholders including patients, physicians, caregivers, researchers, and others in the field of breast cancer, and covers topics ranging from Cancer and Guilt…

… to Metastatic Breast Cancer…

… and, Shared Decision Making, and beyond.

#BCSM also serves as a way to learn about and discuss the latest research developments. Physicians, researchers, and patient advocates regularly share findings from key medical conferences in the space, including those for SABCS, ASCO, AACR, and ASBRs, via live-tweeting (beyond the scheduled chats, the hashtag connects stakeholders 24/7), and post-conference recaps.

In sum, there is an expectation that these chats mainly concern issues faced by patients and families, peer-to-peer support, and the dissemination and discussion of research.

“Begging to Work for Free” and the Costs of Advocacy

Given however, the longevity of the #BCSM community and one of its core functions as a connector of patient advocates — the vast majority of whom have lived experience of the diagnosis — it makes sense that at some point, we advocates would delve into what it takes to do what we do.

“Begging to work for free,” this caustic-sounding, yet 100% reality-based concept, was first shared with me by my fellow advocate Julia Maues when we were talking via Twitter direct messages about our frustrating experiences with a conference scholarship program. It’s what led to my idea for the chat’s topic.

As more and more conferences publicize their must-follow lists of tweeting MDs, it’s time to recognize and better facilitate and reward the work and the considerable impact of engaged patients and advocates.

Indeed, for us, going to medical meetings is a key aspect of what I like to think of as our self-appointed job descriptions. We attend them to:`

  • Keep learning about the topics of interest and import to ourselves and our constituents.
  • Share that knowledge both in real time by live tweeting, and after the fact via presentations, blog posts, podcasts, etc.
  • Expand and deepen our multi-stakeholder networks by meeting all the people — not “just” our fellow advocates — IRL (in real life). This can lead to productive collaborations and can also be fun!

The Financial Costs of Advocacy

Costs add up when patient advocates attend medical meetings, even when we benefit from scholarships and reduced registration rates, as illustrated by the following selection of tweets from the chat.

Consequences of these costs include inequity in representation:

It was great to be able to converse with a representative of a conference organizer, especially as they have been working to improve patient advocate access:

We continued to share tips for navigating the costs and ideas for improvement:

Hotel Points, Airline Miles, and #BCSM

This is how we got to those trending hotel points:

A few days after the chat, I used Signals to scour the database and found this:

Back on the chat, the concept of donated airlines and hotel points continued to resonate, sparking many a retweet, as well as a brilliant idea:

And, days after the chat, tweets kept coming as new thoughts arose, for example:

Body, Mind, and Soul — Additional Costs of Advocacy

Patient advocacy is not for the faint of heart, as it incurs costs beyond the financial. Whether we attend conferences across town or on the other side of the world, mentor the newly diagnosed via phone or video-call, or tweet up storms from the couch, we rely on the resources of our bodies, our minds, and our souls. We also touched on these topics during the chat, and shared tips for handling them.

The costs can end up feeling all encompassing, for instance when conferences expect advocates to fundraise to attend.

Last but not least, the aspect of this work that both likely takes the largest toll, and provides the enduring flame for so many of us to keep at it. The losses of our friends, loved ones, and fellow advocates:

Lessons for Conference Organizers

In Symplur Signals, the chat’s most retweeted item was from cancer research scientist and advocate, Hillary Stires, PhD. Her lessons for cancer research conference organizers apply to all conferences in healthcare. Yes, there are conferences that already do this well, yes there are conferences whose organizers have the best intentions, however, even in the best of circumstances, given the benefits that engaged patients and advocates yield, there is always room for improvement!

For more about this chat, please see the analytics and full transcript.

Liza Bernstein

Liza Bernstein - @itsthebunk

Liza Bernstein, who is NED (No Evidence of Disease) after three primary cancer diagnoses, is a patient advocate serving a global audience via social media, conference attendance, live-tweeting, speaking and media engagements, and in-person mentoring. She also collaborates, co-designs, and advises across the multi-stakeholder healthcare spectrum to break down silos, foster understanding, promote education and empowerment, and accelerate change. Liza is a Stanford Medicine X founding ePatient scholar, advisor, and former board member, and is Symplur’s Consultant for Insights and Development.

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