Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.
One I would love to make my profession is having a patient in the room when public policy is being made. Ideally, I would be that patient, but any one of us could contribute. Now, there are a lot of different kinds of policy, some originating in the private sector like value-based care models and patient quality and safety standards. Then there is the public policy from states’ insurance regulation to Executive Branch agency policy to legislative branch bills that end up as laws and code. Who better to help craft those policies than the ones who will benefit from good ones and suffer from bad ones?
*Steps onto soapbox.*
When it comes to policy, I know how the sausage is made. I have even written some agency policy myself. Most of the time, it is not particularly exciting, but it is important. It sets the rules particular groups have to follow, whether it is providers, insurers, drug companies, hospital systems, or others. But it affects us, the patients.
So, why isn’t there a patient in the room when policies are being made? Right now, it’s almost all academics, researchers, and people who have been in the healthcare system as administrators or practitioners.
Great! They know how things work. But we’re the ones who have to deal with it if policy doesn’t quite go as planned or if there are unintended consequences. A few examples:
Lack of regulation (policies that dictate behavior) has allowed drug prices to soar and pharmacy benefits managers to enter the marketplace unchecked. There is no need for middlemen, except to lower the insurer’s costs, which is not passed on to the patient.
The ACA sought to offer reasonably priced coverage to everyone, but there was still a “family glitch” where subsidy eligibility was only calculated based on whether employer coverage was available and affordable for the individual. I am 99% sure that if there had been a prospective user in the room who had four kids, that would have been caught before it was codified.
HIPAA, which is a great effort to protect us, hasn’t been updated to keep pace with technology (it’s the reason we still use faxes in the healthcare system). It drives my providers’ offices crazy.
Even something as seemingly unimportant as visiting hours has a negative impact. If I am sitting in a hospital bed afraid and alone, which I have done a half dozen times, telling me that my support system can’t come for a visit is not going to help me get better.
A big part of the problem is legitimacy. There are very few healthcare professionals, in any role, who take lived experience seriously, let alone give it the weight of an alphabet soup of degrees. I would argue that it is at least as legitimate. It takes doctors about 15 years of school to become expert enough to practice and contribute to the policy discussion. I have been living in this crucible for 38, much of it before having developed the coping mechanisms that adults develop before having to do difficult things. And we have to learn as we go. There is no book or course to give us a foundation. It’s a hard, grueling way. Shouldn’t that count as expertise enough to have a say in the rules that govern our lives?
Another part of the problem is a certain kind of disconnect. As organizations start looking for patient and caregiver input, they can’t find us. As patients and caregivers start to overcome stigma and let a passion to help overcome hesitancy, they can’t find the ones looking for help. But there are places – most hospitals and hospital systems have Patient and Family Advisory Councils. The disease-based advocacy organizations often have connections to research organizations. There is PCORI, which aims to bring patients into the research process. And there are places like WEGO, Savvy Co-op, and PFCCPartners that try to pair us up.
It’s getting better. I, and others I’ve spoken to recently, feel like we’re on the brink of real progress in this area, especially as industry looks to build value-based payment models. (Where Medicare goes, so the others shall follow.) But we still have a lot of work to do.
*Steps down from soapbox.*