You’ve heard the Chief xxx Officer saying, I don’t need to listen to patient experts, we’re all patients. Gee, what do you say to this inexperience? You’ve also heard the empathy and born-again drive of the Chief xxx Officer who has a chronic illness, was recently hospitalized, or is the caregiver of a family member with chronic illness. Nothing can replace the experience of spending a day in a hospital bed or navigating your neighborhood for a day in a wheelchair.
I attended the Society of Participatory Medicine’s first conference a couple of months ago. Some businesses making big money from patient data describing their volunteer patient advisory panels or providing gift cards to their patient experts. We’d like to pay more, but it’s what we can afford.
I’ve been a reviewer of funding requests since 2013 for Patient-Centered Outcomes Research Institute (PCORI). PCORI pays all stakeholder reviewers (patients, clinicians, scientists, administrators) the same stipend-a reasonable amount.
In 2013 and 2014 funding applications I reviewed listed either no payment or $50 gift cards for patient stakeholders on their Research Advisory Boards. By 2016 many funding applications listed $500-$1000 stipends. In 2017 I saw an application that budgeted for the payment of respite care for caregiver experts’ carees. We’ve come a long way.
The US has a love-hate relationship with paying for value. It’s like the Golden Rule: easy to say, tough to do. Just look at the Trump-Ryan-McConnell tax bill. I digress… The healthcare industry values credentials as a proxy for knowledge- whether or not they know what the acronyms mean. Acronyms = expertise. Credentials usual mean deep expertise in a narrow subject. We willingly pay for deep and narrow with credentials. Patients can have deeper knowledge about a narrower subject than those credentialed. We don’t have a means to calculate that value nor a willingness to pay for it.
Patients, parents, and caregivers can have knowledge about a broad subject – life. They have invaluable expertise about the usability and impact of healthcare treatments, tasks, products, and workflows. In general, we don’t have a means to calculate that value nor a willingness to pay for that value.
I provide pro bono expertise (donating my time) as a patient/caregiver expert and I’ve charged and received monthly retainers and good and not so good hourly consulting rates. I’ve been coached to make my case:
My consulting rate is $xxx.
We can’t afford that!
What can you afford?
How about $xxx?
Then I can decide if it’s worth my time. I always say,
I can give you xx hours a month and no dollars. I will not deplete my household budget for pro bono work.
Lived experience + systems knowledge + communication skill have tremendous value! If so, is it worth paying for? If yes, how does the business or grant budget for it?
Are there ethical issues about paying patient experts?
1. If expertise has value, what does it say when we pay for some expertise and not for others? Is it discriminatory or just rude?
2. Most people on expert panels are paid by the organizations they work for. They attend as representatives of those organizations. Some of us are independent of any organization without salary. Is there a conflict of interest when some are paid to attend and others not?
3. Everyone has interest and a point of view. Most usually advocate from their lived experience and expertise. Some are good listeners and open.
4. minded. Good listening and open-minded are priceless. Should we pay more?
5. Organizations and projects could save considerable money by using people with lived experience. Should they share the savings with those advisors?
6. Ethics seem connected to transparency. Would it help to be transparent about the advice we use, offer, and pay for?
More and more patient experts are finding their voice and healthcare-related businesses are seeking that expertise. Several platforms support matchmaking: WEGOHealth Solutions, Savvy Cooperative, Expert Connect. (Transparency – I have a business relationship with WEGO and Savvy).
What has been your experience? How can we support each other in this expert journey?
Great article. I totally agree. Quick note: Expert Connect is not for patient experts. FYI.
We live in the cradle of capitalism. People who contribute to the bottom line are supposed to get paid. Viewed through that lens, things are very upside down for patients (who should be paid for participating in clinical trials and collect royalties on any drugs their bodies helped develop).
Getting back to the main point here – the exploitation and essential wisdom of patient/caregiver speakers and consultants – it is beyond unethical to not pay people who are using their limited time and physical resources to advance the evolution of healthcare.
Not everyone cares about ethics, so folks should also remember that designing, developing, testing, refining, launching and marketing healthcare products without the active paid participation of team members with patient/caregiver expertise is bad business.
As I write this, my mom is trying to swallow an enormous pill that typically gets stuck in her throat, generally a battle that can last half an hour or more. It’s happened to me, too – we are very determined – but I am sure rafts of patients give up on this antibiotic and just get sicker. If patients were on the payroll at this drug company, as respected consultants, I’m sure the medicine would be offered in an easier-to-use form.
It’s as if Elon Musk or, more fairly (Elon does listen and seek input), John Delorean, were to produce a wonderful car with amazing features and send it to market without ever allowing typical drivers to try it out – at which point they might have discovered it is the wrong size/shape for all parking spaces or that its peculiarly-designed doors delivered a horrifying user experience, especially in winter.
I hate wrassling with conference organizers over the fact that I cannot afford to, and should not be expected to, work for free. I do it anyway, because in a society organized around money (and patients in the U.S. rarely have any, due to our unfair healthcare system and insufficient protections against employment discrimination and related damage to pensions), this is a battle that absolutely matters.
When I go to conferences and meet the founders and marketers of various healthcare startups, there’s one line of questioning (among others) they’ll always get from me: “How many patients are on your team? On your board? On your payroll? How do patients feel about this idea? How many patients have tested this, and for how long? How does the benefit to patients of your product or service outweigh the inconvenience of the behavior change necessary to use your product or service?”
Sometimes their eyeballs pop out when asked about paid patients on the design team, but these are important development questions familiar to any MBA or successful entrepreneur. Healthcare businesses are irresponsibly shooting in the dark when they do business without patient consultants in every phase of their business. The simple truth is: they can’t afford to NOT have patients on the payroll.