The organization that believed its own data

Most of the health care world knows the Camden Coalition for one famous idea and one famous test of it. The idea, born among Camden, New Jersey physicians, was “hotspotting” — finding the small number of patients cycling through hospitals with complex medical and social needs, and wrapping intensive, team-based support around them. The test was a randomized controlled trial published in the New England Journal of Medicine in January 2020, and it delivered hard news: 180 days after discharge, 62.3 percent of patients in the program had been readmitted to the hospital, against 61.7 percent of patients who got usual care. Statistically, no difference at all.

Plenty of organizations would have buried that result. The Coalition published it, talked about it publicly — its CEO wrote about the disappointing findings the day the study came out — and treated it as a reason to go deeper rather than a reason to quit: refining the care model, and investing even more heavily in the part of the work the trial couldn’t measure, the relationships. Their own research had already linked patient engagement to what they call “authentic healing relationships” — secure, genuine, continuous connection with a provider. If that’s the active ingredient, then the people with lived experience of complex care aren’t a population to be served. They’re expertise to be hired.

There’s a coda to the trial worth knowing, and worth reading carefully. A later secondary analysis found that the patients who actually engaged with the care management — who took the visits, worked with the team — had lower readmission rates at 30 and 90 days. That’s a subset analysis, not a randomized result, so it suggests rather than proves. But it points in a striking direction: engagement itself may have been the ingredient that mattered. (If you want to sharpen your instincts for exactly this kind of distinction, this issue’s Stay Empowered guide, “Reading a Study Like It’s About You,” was written for it.)

A word of caution about that word

The engagement in the trial means something narrow — a person taking the visits and working with their care team. That is not the engagement in the rest of this piece, where people with lived experience help shape programs and strategy. The two get collapsed constantly, in conversation and in the literature. Delivering good care to people is not the same endeavor as partnering with them on decisions about the organization.

Engaging PWLE can make an organization better at delivering services. It is still a different thing.

I’m grateful to Evelyne Kane of the Camden Coalition for catching that slide in an earlier draft of this piece. It is an easy one to make, and I made it.

What they built

That conviction is now infrastructure, not a slogan. In Camden, graduates of the Coalition’s care management programs and community residents sit on the Community Advisory Committee and on the Board of Trustees, and both roles are compensated. Nationally, the National Consumer Scholars program develops leaders with lived experience from across the country, and Amplify, the Coalition’s consumer voices bureau, connects those leaders to health care organizations that need them in the room. Their INSPIRE initiative is working on something bigger still: a national strategy for authentic partnership between health systems and people with lived experience, because most organizations now believe they should engage communities and genuinely don’t know how.

The word that comes after engagement

Readers of this newsletter have seen the ladder before: audience, then speaker, then a seat, then a vote, then calling the meeting. “Patient engagement” — the phrase on every grant application and hospital website — usually describes the bottom half of that ladder. You’re invited, you’re heard, you’re thanked. Empowerment is the top half: your vote counts the same as everyone else’s at the table, and sometimes the table is yours. The Camden Coalition is one of the few organizations in the country that has climbed the ladder on purpose and in public — trustees with lived experience are not a metaphor. That distinction between engagement and empowerment is what I’ll be arguing in Oakland, and it’s the standard this publication holds every “engagement opportunity” against.

Where to see it live

Putting Care at the Center is the annual conference of the Camden Coalition’s National Center for Complex Health and Social Needs — October 14–16, 2026, in Oakland, California, co-hosted with Kaiser Permanente under this year’s theme, “Sustaining progress, building our future.” Details and registration live at camdenhealth.org/annual-conference. If you can’t be in Oakland, watch the Coalition’s site and this newsletter — we’ll report back.

And if a fellow PWLE reads this and wonders whether a program like the Consumer Scholars is for them: that wondering is the first rung. Step on it.

— Tom