Patient Empowerment: A Year in Review and a Call to Action

2023 had real progress on patient empowerment. Most of it was still cosmetic. A year-end accounting of what actually changed and what's still theater.

2023 had real progress in patient empowerment. It also had a lot of theater, and the two are easy to mistake for each other if you're only counting initiatives instead of outcomes.

What actually moved: patient advocacy groups like Patient Worthy grew and got louder. Laws expanding patients' access to their own clinician notes and test results went from rare to normal in more places. The Long COVID Patient Research Collaborative showed what happens when patients aren't just study subjects but co-designers of the research.

What didn't move: patients are still mostly absent from the rooms where clinical guidelines and policy actually get written. Most healthcare providers still get no real training in shared decision-making, only in the vocabulary of it. And the empowerment gap tracks the same lines it always has, worse for anyone without transportation, without an interpreter, without the energy to fight for a seat that should already be theirs.

Real empowerment for 2024 means patients on the committees that write clinical guidelines, not consulted after the fact. It means patient-centered communication taught as a clinical skill, not a soft-skills afternoon. It means funding research that patients help design, not just participate in.

On a personal note: this was a year with real setbacks in it for me too. Relapse doesn't mean the work stopped mattering. It means the work is harder than the year-end recap format usually admits.

Further reading:

• The Value of Patient Empowerment in Healthcare, Mayo Clinic
• Patient Empowerment: Why It's Important and How to Implement It, Commonwealth Fund