After all of the groundbreaking work done by Dave deBronkart dating back to 2009, including his e-book, I don’t know why this is still an issue. Several guides on compensating patients for our expertise such as the Patients Included charter and Patient Partner Compensation guide are out there for public consumption. However, numerous miscommunications continue to happen regularly where a patient is invited to speak at a conference, but when we start to negotiate our honorarium, we are told “there isn’t a budget.” Or worse, the expectation is that we will attend and speak for free, just to “share our story.”
As John Nosta pointed out, if a conference charges attendees/sponsors/exhibitors, then there is money available to compensate speakers. Often, I speak on panels with executives who represent their employers as part of their paid, already full-time jobs. Many patients are self-employed, on disability, or both. This is compounded by the financial toxicity of what qualifies us to, unfortunately, identify as “patients” in the first place: a chronic illness that in some cases disallows full-time employment. Therefore, the expectation needs to be that payment is always provided, whether for virtual or in-person opportunities, to value proficiency, time, preparation, travel, and expenses. If a patient is working in a research setting, compensation should be an additional line item written into a grant.
A patient perspective can generate leads as well as increase social media and content engagement for your organization. Also as Alicia Staley notes, “it can change the way an organization thinks from the inside out.” Patients should be classified as consultants and advisers when we contribute in a professional capacity to industry or health systems. Our training through combined lived experience and individually sought expert knowledge is the equivalent of anyone working intensively in the field. And that is worth a whole lot.
When not extending our services in a ‘work’ capacity, patients are fulfilling the ‘mission’ part of our identity: as advocates. In this role, we serve our peers to publicly support or recommend a particular cause or policy. Some of us are paid as advocates, but most of us are not. Ultimately, an advocate represents an underserved individual or community in the spirit of collecting information to disseminate back to them for improved outcomes. The advocate serves as that person/community’s voice for positive change. The goal is that we advance learning and do better. Many of us as advocates feel a certain calling to “pay it forward” for those who come after us – that they have an easier time of whatever plight befalls them than we did. It’s a desire to contribute to the greater good.
In this quest for knowledge, patient advocates seek to attend conferences and webinars when/where we can carry key takeaways back to our constituents. Since social media during COVID leveled the playing field for a variety of stakeholders in the healthcare ecosystem, all healthcare-related conferences and webinars should have a patient advocate category for registration.
Matthew Herper of STAT news stepped up to resolve my tweet ask, and now there is a patient advocate category. Kudos to Matt for his leadership in making a change for patients that others will follow. Michael Gaspar was instrumental in helping #HIMSS20 and #HIMSS 21 embrace patients. I’m also working with Victoria Tiase to include patient advocates at AMIA. Back to my above point regarding our position of being financially compromised, the registration fee for patients should be discounted or ideally free.
I am hopeful for durable change this year in these two areas for those of us who identify as patients: pay for performance and inclusion, not only as attendees at conferences but as valued speakers and panelists. I will continue to call out conferences that have areas of improvement for patients – not in a snarky way as Dr. Matt Keener thoughtfully pointed out, but with love and empathy.
Every time I share examples from the ‘journey as a patient’ time in my life with a client, I ultimately receive numerous direct private messages from employees who reach out to tell me what they maybe don’t what anyone at their company to know: that they felt seen and represented because of an illness they are dealing with or a loved one they are caring for.
COVID unfortunately created more “patients” than ever before and exposed a level of vulnerability never before felt. If you’re of a certain age like me, you’ll recognize that the title of my blog is a song reference. Even though there are mountains in our way, we climb a step for patients every day.
Stacy Hurt, MHA, MBA works as a Patient Engagement Consultant to represent the consumer perspective in clinical decision making, health IT user experience, and pharma/biotech drug development. She was the patient keynote speaker at DPHARM 2021 and is a HIMSS Digital Health Influencer. Stacy regularly advises on how COVID innovations such as telehealth need to remain as permanent options to enhance patient care. Connect with her at https://stacyhurt.net/