The cost of patient participation

Everyone wants patients to be engaged.

There are different levels of engagement, though, and those can vary over time.

There’s engagement in your own personal health. That varies.

There’s engagement with your community or communities around your health. That varies.

There’s engagement with the healthcare system on matters related to your health and/or care. That varies.

And there’s engagement with the healthcare system as a way to change the system itself. That, too, varies.

I’ve chosen to spend a lot of my time engaging, because I’ve learned (and feel) that I can make a difference in some of the areas I’m passionate about. Where I do that engagement varies based on the amount of time I need to take care of myself, my passion for sharing the amazing tools I have the privilege to choose to take advantage of, and the places where I feel I can or should be engaged.

This is not just about choosing to spend time online or offline. There’s also the choice to engage with the broader healthcare system in places where patients aren’t always privileged to be a part of (even if they should).

It’s both an opportunity and a burden.

It’s an opportunity to share your story, your perspective, and propose solutions and partnerships to make a difference now and in the future.

It’s a burden, because no one person can represent everyone; it’s a lot of work; and it’s expensive.

The amount of work and the expense associated with engagement is something that is easily overlooked. It’s easy to feel honored, as a patient, to be invited to participate somewhere in a place where your voice (or the voice of a patient) is needed. But it’s hard to draw the line on balancing the burning need you have to help change things, and all the other priorities you have in your life.

The requests for patient participation vary, but as a patient myself, some of the things I’ve been asked to do include:

  • Getting my brain “picked” in general
  • Getting my brain “picked” for other patient speakers and participants in various panels, events, committees, etc.
  • Writing chapters for books or blog posts for various blogs
  • Speaking at events – which includes often full days or multiple days of travel

Given each of these activities, there’s various “costs”:

  • There’s the time spent engaging in a call or writing a blog post
  • In the case of speaking, there’s not just the time it takes to speak, but also preparation time to write/prepare the speech and any accompanying visuals, and also often you’re asked or expected to participate in several hours if not multiple days of the rest of the event, too.
  • And, the travel time it takes, from the moment you leave your house, hours in the airport prior to boarding the plane, flight time, time to the hotel, etc.
  • Plus the obvious costs of airport parking or Ubers; expensive meals while in transit; flight costs; location Ubers, hotel, and more.

And so all of this means:

  • Time away from your job, which maybe you can borrow an hour now and work late later, but in many cases for many people requires vacation time or unpaid leave
  • Time away from your family and things you’d otherwise be doing
  • …and in particular, time away from doing the things that likely brought you to the attention of those who want you to engage in another way.

Given the costs of these impacts of travel or extracurricular participation, no one expects healthcare providers (MDs, etc.) or employees of healthcare companies to pay for any of this themselves.

So why on earth do we expect patients to so often do all of this for free (including often asking patients to self-fund travel and associated costs)? Or even offer to pay some of the travel costs (usually flight/hotel, forgetting associated travel expenses that add up) but not offer an honorarium to cover all of the time spent preparing and giving the talk and participating in the event?

Maybe because it’s easy to set the bar low and see who says ‘yes’ to that? So we, as patients, have to push back and say that’s not ok. And that’s what this post is about, because I am the first to admit it’s hard but I’m also frustrated with my time and other patients being valued so minimally.

Depending on the person and their health and their life situation, their decision making process will differ based on what they prioritize and what they want to focus on. But a general thought process I go through includes the following questions:

  • Am I even free on the day of the thing, and the day prior/after when I would need to be traveling?
  • Am I doing too much around that time?
  • Is it something I really, really want to do*?
  • Are they covering travel costs?
  • Are they really covering all the travel costs (Ubers, etc.)?
  • Are they also offering a reasonable honorarium that is a value for the time and energy it takes to prepare and participate in the event?

“Reasonable” honorarium is the hard part. Everyone’s expectations here will be different, but I’ll offer up a recent situation to think through this.

I was invited to speak at an event. As a speaker, my registration cost was going to be waived. (::group eye roll::). Travel and lodging scholarships were possible if that was a blocker for participation. I wrote back and thanked them for the invitation, but stated that not only would I need travel and lodging, but also would need an honorarium, and I suggested $500/day of travel/participation.

Since I expect to spend ~2 hours preparing for the event, plus it would take 8 hours to travel there, plus expected to engage at the full day of conference (8 hours), plus fly home that night (8 more travel hours), that means 26 hours for this event.

At $500 x 2 days (travel day, plus event/travel day), that ends up being ~$20/hour. Not much, but $500/day might be reasonable for this event and their budget.

They wrote back and offered $250 for one day of conference participation, or $250 per day if I participated in both days of the conference (meaning a full 8 hour travel day, day one with 8 hour conference, and day 2 with 8 hour conference and the 8 hours of travel home).

  • If I do one day of travel and one day of conference earning $250 for 26 hours of travel and work, that’s less than $10 an hour.
  • If I do the one day of travel and two days of conference, that’s less than $15 an hour.

You can:

  • Nitpick the math, but even $250 for an hour talk is low, given that generally 2 or more hours of prep go into a single hour talk, not to mention all the travel time.
  • Say they should invite a local patient then (but they’re still likely going to be underpaying that person’s time, given they’ll have several hours of local travel time, plus again 3+ hours of prep and speaking time, plus the additional hours of event time).
  • Recognize that this is a growing problem, and start pre-planning to involve patients and budget for valuing their time the way HCPs or other professional’s times are valued.

Are patients trained as HCPs? No, but often time the patients engaging and speaking up/out have as much insight into the problems and ideas about solutions as HCPs will. It’s not about the credentials; it’s about the value provided. Patients provide incredible amount of value. No question.

So events need to provide monetary compensation that values a patient speaker’s time, OR otherwise provide compensation that’s valuable to them – in order to get patient speakers.

Note: Some conferences can’t pay for people to speak, but may be in a location where it’s worth it to you (and you’re financially able) to attend for travel costs alone. Other conferences may be local or require minimal travel, and be the kind of event you really want to participate in, and it’s worth it to you. Some conferences also can provide value in other ways, such as streaming or recording your talk in a way that you can distribute later and use for other purposes, or do PR around you as a speaker at the event, so you have more chances to tell your story.

There’s no perfect answer for everyone on how to decide when they should say yes/no. It depends on your goals (financial, time wise, life wise, and passion wise), and those may change (even weekly or monthly) based on when you get your requests. I’m learning to better in saying “thank you for the invitation, but it’s not something I’ll be able to participate in” for things that aren’t aligned with my work or goals and also don’t value my time. But I’ve also been very inspired by some of my other patient friends who have been strong advocates for patient compensation for all activities, which is not just why I wrote this post, but also why I’m promising myself to do better in explaining to an organization why I say no, complete with the math break down. It’s not about trying to convince them to change their minds, but encouraging them to think carefully about it in advance of a patient speaker invitation next time about the value they want to put on that person’s participation.

10 thoughts on “The cost of patient participation

  1. “No one expects healthcare providers (MDs, etc.) or employees of healthcare companies to pay for any of this themselves.”

    Dana, that’s simply not true.

    As an endocrinologist for many years, I have been to countless professional conferences as an attendee and presenter. I can assure you that there were many times when I was a presenter and expected to pay registration (usually highest rate for MD’s) and all expenses myself. Even if the conference was “paid for” by my group practice, it was also charged to my personal overhead, so the main benefit was that I was able to pay out of pretax rather than posttax money.

    Also, if I took time off from work to go to a conference, I didn’t just take a day without pay. I was still responsible for paying any overhead expenses that accrued while I wasn’t producing income for the practice. For those MD’s employed by universities and hospitals, it’s understood that conference expenses are part of the compensation package.

    I also gave numerous talks at patient educational conferences and support groups with no compensation.

    So, my point is that you shouldn’t assume that every MD standing at a podium, presenting a poster, or sitting on a panel is raking in the big bucks. Some are, but many are not. Just like you, we balance our desire to share what we are passionate about with financial reality.

    And, yes, there were times when I received honoraria and expense coverage. It was nice when it happened, but it was far from universal.

    Enough of my rant. I really do respect what you and the others in the DIY diabetes technology community have done and your willingness to share your knowledge with others.

    If you’re in the Atlanta area, give me a shout and we can pick each others brains.

    1. Dennis, thanks for your comments. I don’t think – or make the assumption when seeing a presenter – that doctors are making “big bucks”. But to your point, they often have organizational support (either applied to their compensation, and/or additional funding to help support their travel and speaking as a part of spreading their work). Patients (usually) don’t have these resources, so I think it’s important to raise that point and think about what the solutions are to make it possible to assist with the gap in funding and resources as a result.

      1. Dana, I think your “No one expects …” statement simply caught me at a bad time and ruffled my feathers.

        Planning and budgeting a successful conference is a difficult art. I’ll paraphrase an old expression. When recruiting speakers, pick any two: easy, cheap, or great.

  2. So well said, Dana! Thank you for bringing this perpetual conversation to another level. My hope is that right-minded conference organizers will be better able to hear the issues, because of your clarity here.

    It must be said that some conference organizers are in the business of cobbling something together with whatever pieces they can find that fit in their “costs” budget, and for those people, the best deal is to find someone with a day job who can do it on the boss’s expense account, so In almost every case, I’ve found, those conferences don’t get it and end up being not good to work with in one way or another. (What’s your experience on that?)

    Having said that, all this is a sign of conferences organized around the old model of “let’s see what we can pull together without paying for content,” and things are starting to evolve. I’ve found that particularly outside the US the patient voice can be valued as a real contribution. You?

    Thanks again –

    1. btw, my contribution to this ongoing conversation is my Ratty Boxers post four years ago.

      A question for thoughtful conference organizers to consider: honestly, will the intellectual value of your event’s content be increased by the presence of well chosen patient thinkers? If no, why bother (and why bother us)? If yes, it does make sense to allocate money for value.

      Having said that, I (like you) will sometimes choose to attend if it lets me be heard by an audience I want to connect with and/or lets me learn from a particular community.

    2. Thanks for the comments, Dave. I think you’re right that conferences are at an inflection point of really needing to center around their goals and budgeting accordingly to have the kind of experience (and content) they’re targeting. As someone who’s organized events, I know it’s a learning process, which I why I’m trying to do better on my end about communicating back if and when I need to say no, thanks, to an opportunity.

      I am not sure with regards to international vs. US based conferences if they value patient voices more; or if they’re just more aware of the (even more increased flying abroad) cost of time and travel to participate in their events when they invite US-based folks, and budget accordingly.

  3. It’s like you wrote this personally for me! This is a very well written piece that I intend to reference often professionally and personally. As someone bouncing back and forth between the space of patient/family advisor and healthcare professional I ALWAYS find myself having to explain why it is unconscionable to ask a patient (who has already paid the ultimate price) to donate their time, talent, and finances to an organization that makes money off that individuals back. I work in this space because I am engaged and I want to make a difference but the cost of my personal engagement should not be at the expense of the what little time and money I have left after laying in a hospital bed. Consultants, and industry “experts” are often handsomely compensated to say the same thing we are expected to say for free.

    For the detractors reading this, please don’t use this as a time to one up Dana or the other people who are graciously extending themselves to improve the healthcare landscape. This piece like many other things in healthcare is not and should not be about you.

  4. Dear Dana,
    thank you for this very good description of our situation as patient advocates – our personal economy. Next time somebody critizes me for ‘cancer tourism’ I will just send them the link to your post.

    It is really also a decision whether you want to spend your precious time in planes and sticky, unhealthy conference venues in order to make a difference for your fellow patients.

    And you didn’t even go into the whole field of proper recognition by our medical experts. The look in their eyes of “what is this person doing here on my panel?”

  5. Being recognised as an expert/specialist in our T1 condition proves to be difficult since no higher education degree can be attached to it.
    No one goes to university to get a T1 Expert-Patient Diploma.
    Yet, I know so much more about my condition and T1 all across than most professionals that have various level degrees.
    I hate that some of them feel entitled to belittle my decisions, actions or access to the care I chose.

    I do not guest speak often, but did recently linking my professional expertise to T1 and was totally expected to do it for free.
    I did it because I care and I want to give back, but if I was asked on a regular basis as you are, I would totally reconsider.
    Frustrating it is.

    Let’s stay positive, advocate for care/equipment/cure, recognition and move forward! We can do this 😉

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