Last time I arranged three shows by where the person with lived experience (PWLE) sat. Guest, then producer, then host. A clean ladder, and I climbed it on purpose.

This time the ladder does not hold.

I promised you the shows about engagement itself, and here they are. What I did not expect was that looking at three of them together would tell a different story than the one I went looking for.

Each of these shows is doing the work. Each of them is also showing the strain of doing it.

asPERusual

Anna Chudyk hosts. She is a health researcher at the University of Manitoba, and the show came out of a study she ran with Roger Stoddard, a patient partner who died in 2022 and whose name is still on the show.

Three seasons are up. Each season takes a theme. The third one worked through engaging children, youth, and families in research, and the episodes are conversations with the people actually doing it — a family partner and a clinical-trials researcher who share one job title at a rare disease network, a parent partner and a psychologist on a pediatric pain project.

Here is the thing I told you about last time. Episodes are paired with a companion segment called onePERspective, in which a featured guest comes on to give their own reflections on the episode that just aired. For most of the third season that guest was Kathy Smith, a patient partner.

Not a quote in the show notes. Her own segment, with her name on it.

Now the part I have to tell you plainly. The last episode I can find is the final one of 2025, in which Anna says she is taking a short break while she sets up a new course. That was nine months ago and nothing has appeared since.

I could not confirm the show has come back.

Listen to it anyway. Three seasons is a lot of listening, the episodes carry transcripts, and a show on pause is still a show you can learn from. But I am not going to tell you it is running when I cannot show you that it is.

The Bridge: Your Health Your Voice

This is the official podcast of the PATIENTS Program at the University of Maryland School of Pharmacy. Paris Barnes hosts now. Rodney Elliott hosted before.

The program describes itself as the bridge between the community and researchers, and the show is exactly that — episodes on community-led research projects, on a national initiative to take the program’s approach beyond Baltimore, on what it means to be under-engaged. It runs on video as well as audio, which matters if captions are how you get through an hour.

It was still publishing at the end of August, a new episode every two weeks.

Two things to hold while you listen.

The first is who is holding the microphone. On this show, the host works for the program and the community members are the guests. That is not the arrangement I was pointing at last time. It is an institution talking about its own engagement work, which is worth hearing and is not the same thing as a person with lived experience running the show. I say that knowing I have been asked to sit in that guest chair myself.

The second is that the episodes tied to its national expansion credit sponsors, among them Novo Nordisk, Bayer, and AstraZeneca. One June episode was funded by a PCORI engagement award and says so in its notes.

I am not telling you that makes the show untrustworthy. I am telling you because you would want to know, and because knowing who paid for the room is most of what this newsletter is about.

Patient Partner Innovation Community Podcast

Desiree Collins-Bradley hosts. It is sponsored by ATW Health Solutions and by Dr. Knitasha Washington, who founded that firm and who started the show.

Sixty-eight episodes exist. What they do well is treat the advocate as the expert in the room rather than the illustration.

One episode has Janice Tufte, a diagnostic safety champion, describing her work as a subject matter expert helping shape a federal reporting tool — and what she pushed for was that the form be fillable and usable in an actual care setting. Another has a cardiovascular nurse practitioner who was misdiagnosed before her own heart attack. Another has a father describing being talked past at his medically complex child’s bedside, and the support group he built out of that.

These are not case studies. These are people describing work they did.

The last episode I can find is the sixty-eighth, from July 2025. Nothing has appeared in the fourteen months since. If you subscribe and nothing arrives, that is why.

What the three of them have in common

I went looking for the shows about engagement and found three that are each running on somebody’s spare capacity.

One paused because its host had to go set up a course, and has not come back. One is kept on by a university program with pharmaceutical sponsors. One is carried by a consulting firm whose founder started it, and has been quiet for more than a year.

None of them is funded the way a research project is funded.

That is not a complaint about any of these three. It is the finding. The infrastructure for talking publicly about engagement is thinner than the infrastructure for doing engagement, and both are thinner than the infrastructure for the research itself.

A note on access

All three are free.

Transcripts held up better this time than last. asPERusual carries them. The Bridge posts a full transcript with the video version of each recent episode. I could not confirm transcripts for the third.

If a show you need does not have one, write and ask. Some will send you one, and the asking is its own small piece of advocacy.

Three shows about the work, and every one of them held together by somebody’s goodwill.

That is worth noticing before you go looking for a room where your time will be paid for.

Next time, in Issue 7: when the condition is the community — the shows built around a single diagnosis, and what happens to engagement when everyone in the room already knows what you mean.

— Tom