Worth a Listen · Installment One · A continuing article
From Guest, to Producer, to Host
Three shows, arranged on purpose. In the first we are the guest. In the second we make the show. In the third we run it.
There are days I cannot read.
The pain takes the piece of attention that holds a line of text still. The words stay on the page and I keep sliding off them.
On those days I can still listen.
Worth a Listen is a continuing article, not a one-off. It returns every other issue — next in Issue 5. Three shows at a time, chosen because a person with lived experience (PWLE) is somewhere in them other than the case study. This time the three are arranged on purpose. In the first, we are the guest. In the second, we make the show. In the third, we run it.
Send me what you are listening to and I will run it here.
One — where we are the guest
Chronic Pain Reset
Who makes it: Afton Hassett, PsyD, a pain psychologist and researcher at the University of Michigan and author of the book the show is named for. She also serves on the Advocacy Committee of the United States Association for the Study of Pain (USASP). More than sixty episodes and still publishing.
What it is: Conversations about what the science says people with pain can actually do. Guests run from researchers to people living with the conditions being studied. Daniel Clauw, who directs Michigan’s Chronic Pain and Fatigue Research Center and co-directs the National Institutes of Health (NIH) Helping to End Addiction Long-term (HEAL) National K12 pain training program. Kim Dupree Jones of Emory on fibromyalgia. Cheryl Crow, an occupational therapist living with rheumatoid arthritis, who hosts her own show called Arthritis Life.
Why this one: Be clear about what this is. It is a pain science and self-management show, not a show about engagement. It leads this section anyway, because it is the one I would hand to someone on a bad afternoon who has never listened to anything about pain before. Start where a person can actually start.
Then notice who she seats at the table. A researcher choosing to put lived experience in the chair, episode after episode, is making a decision most of them do not make.
Access: Free on all major platforms. The show also points to a set of free self-management resources on her site — a thriving plan, guided imagery, progressive muscle relaxation, breath awareness, and the PainGuide program. I could not confirm transcripts.
Two — where we make the show
PAINCAST: Neuropathic Pain Unravelled
Who makes it: Fiona Talkington, a BBC Radio presenter who lives with neuropathic pain following treatment for breast cancer. She is one of three patient partners on PAINSTORM, a four-year neuropathic pain research project led out of Oxford. She presents and co-produces the show with BBC producer Mark Smalley.
What it is: A creative documentary series about living with long-term nerve pain. People living with the condition are interviewed alongside the scientists studying it. One episode follows Talkington and Smalley to a neuropathic pain conference in Berlin, where they watch the research team at work among its international colleagues and hear from PAINSTORM’s own patient partners.
Why this one: Read the credit line again. She is not a guest on the consortium’s podcast. She makes it.
Access: Free, on all major platforms and through the PAINSTORM site. I could not confirm transcripts.
Three — where we run it
Not Just Patients
Who makes it: Caitlin Rich and Clarinda Cerejo, who co-host. Both live with rare disease and both work as qualified patient experts. Monthly.
What it is: Conversations about breaking down the barriers to real involvement in health care, with guests drawn from inside the institutions. Emma Doble, Patient and Public Strategy Editor at The BMJ, on what it took to move a major medical journal from managing informed patients toward treating them as partners in research and editorial decisions. Derick Mitchell of Patient Focused Medicines Development on getting several kinds of stakeholder into one room.
Why this one: Two of us asking the questions, and the guests are the ones who have to answer for how their institutions behave. That reversal is rarer than it should be.
Access: Free. Also on YouTube.
What to listen for
Once a show is running, the useful part is not only what is said. It is the arrangement.
Who is talking, and who is being talked about.
Whether the PWLE guest is allowed to disagree on air, or only to testify.
Whether anyone says what the engagement cost — the money, the travel, the hours.
Whether the show ever says what happened to the input after the meeting ended.
That last one is the tell. Most will not answer it. The few that do are worth your subscription.
A note on access
Every show named here is free to listen to. Free is not the same as accessible.
Transcripts are the gap, and in this installment I could confirm none. If you need one and cannot find it, write to the show and ask. Some will send you one, and the asking is its own small piece of advocacy.
Streaming an hour of audio is not free for everyone either. If data is tight, download over a connection you are not paying for by the megabyte.
Three shows, arranged from the chair to the microphone. A podcast will not give you a vote. It will tell you what the room sounds like before you walk into it, and who is already inside saying the thing you thought only you had noticed.
Next time, in Issue 5: the shows about engagement itself, including one that hands a patient partner the microphone to say what she took from the researchers’ episode.
— Tom
Confirmed with publishers and podcast directory listings in August 2026. Where a detail could not be confirmed, it is flagged above.
- CHRONIC PAIN RESET Podcast — with Dr. Afton Hassett. Afton L. Hassett, PsyD. aftonhassett.com; Apple Podcasts, Spotify, Amazon Music, iHeart.
- PAINCAST: Neuropathic Pain Unravelled. PAINSTORM consortium. painstorm.co.uk; Apple Podcasts, Spotify.
- Not Just Patients. Hosts Caitlin Rich and Clarinda Cerejo. notjustpatients.com; Apple Podcasts, YouTube.
PWLE Voices carries no advertising and takes no money from anyone. No show named here paid for, asked for, or knew about its inclusion.
The views, positions, and recommendations expressed in this article are based on my personal experiences. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA), the Patient-Centered Outcomes Research Institute (PCORI), or any federal program or committee on which I serve. AI was used for research, editing, and organizing; final text is my own.