I am thrilled to share that I am writing a book for MIT Press about the alchemy, grit, and soul of the health innovation pipeline that is powered by people connecting with each other to solve problems.
Here’s the back story, which illustrates one of my core principles: Do the work that needs to get done, even if it is not in your job description, even if nobody’s paying you, even if nobody notices that it was you who did it. Good things happen when you show up and pitch in.
I don’t want to suggest that it’s easy to do. You struggle and toil and wonder why you are the one fixing the printer, testing the code, running the numbers one more time. You feel like you are shoveling your way out with a spoon — or maybe that’s just me, writing 500 words every day, no matter what.
When the pandemic knocked everyone off-kilter, clinicians and scientists ran toward the crisis. The rest of us waited, wondering what we could do to help.
I had started tracking the trackers, pulling together links to every example of COVID-19 grassroots data collection I could find. Goodness poured into the comments and into my Twitter mentions. Filmmaker and ME/CFS expert Jennifer Brea alerted me to the Body Politic’s May 2020 report on prolonged COVID-19 symptoms. Chronic-disease self-management research titan Kate Lorig shared a link to her lab’s caregiver survey. And then Helen Burstin, CEO of the Council of Medical Specialty Societies, asked if I would be interested in contributing to a webinar series about clinical registries.
Heck, yes, I would!
I saw a chance to help people with Long Covid in their fight for recognition and I grabbed it.
A dream team agreed to join me: Gina Assaf and Hannah Davis of the Patient-Led Research Collaborative, Emily Sirotich of the COVID-19 Global Rheumatology Alliance, and Gary Wolf of Quantified Self. On August 12, 2020, we presented “Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data” to an online audience of clinicians, researchers, policymakers, and patient advocates. (Here’s a preview and an after-party post.)
Our webinar was a tiny prelude of what was to come in terms of mainstream recognition for the Patient-Led Research Collaborative. If they were a band, their research would have been the song of the summer. It has been presented to the WHO, NIH, CDC, UK Parliament and cited by CNN, NPR, JAMA, BMJ, and The Atlantic, to name only a few. Their rise was meteoric and their impact strong. They showed up big for each other and for the world.
The light that they shine has bounced all over the place, including onto the screen of Bob Prior of MIT Press. He read my quote in Tanya Basu’s article about how COVID-19 “long-haulers” are organizing online to study themselves and sent me a note to ask if I was interested in writing a book about patient-led innovation.
Heck, yes, I am!
The book will stitch together the extensive research that has been done by our colleagues in academia, the progress and investments made by health care industry leaders, and the fieldwork I have done in patient communities over the last 20 years.
Please stay tuned as I’d love to get input on some of the concepts, which I will share here. I’m grateful for any and all help. The book’s expected publication is February 2024. In the meantime, I’ll be here at my keyboard, doing the work.
Congratulations! What an inspiring post!
Thank you! I’m continually inspired by the people I’ve met in the e-patient movement.
This is so exciting Susannah!!!
Thanks, Lesley! I draw from my own experience as a food-allergy mom, as I know you do, too. I realized recently that parents like us are “lead users” of preventive allergy education — creating what we need, doing the work that other parents may not know they need to do (or have time to do). Can’t wait to share my model of peer health innovation and get your feedback on it.
Agree completely – I call this the “little red hen” model and some of the best fighters in the field take the same approach. The patient-led research initiatives were a major inspiration for the selection of patient reported outcome measures and our use of patient & public engagement in the “HEAL-COVID” trial (https://heal-covid.net/). The data from the surveys and reports that so many people contributed to meant we could make much better decisions about which domains were most important, and when it came to getting permissions, collaborations, and translations from around the world I was blown away by how responsive and generous people were. Would that it was always thus!
Super cool, Paul, thanks for the link!
And yes, would that it was always thus — and how might we build systems to make it so?
Susannah, this is so exciting! It has been an honor to work with you and the Patient-Led Research Collaborative!
Thank you! You are a fire-starter of ideas and initiatives — grateful to be in your orbit.
You will be in excellent company. I just looked at your editor’s book list and ordered two of them from a local bookstore, Labyrinth – “The Distracted Mind” and “The Alchemy of Us.”
Thanks! Another book on Bob’s list that I love: The Autobiography of a Transgender Scientist, by Ben Barres.
Great news, congratulations Susannah!!! Have you seen my latest publications: https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd202408 and https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd212647 Let me know if there’s anything I can do to help! You might be interested in a research program that I am part of: https://ki.se/en/lime/patients-in-the-drivers-seat-a-multimethod-partnership-program-on-patient-driven-innovations
Thank you, Sara! I had seen the ethical aspects of personal science article (it’s terrific) as well as your Nature commentary, but not the other one. Will read it eagerly. You are a wellspring of inspiration!
Thank you and right back at you!
Fantastic news, Susannah! and well-deserved recognition, for you, your tireless work, piercing perspective and for your peers, colleagues, patient friends and caregivers that have been doing the work alongside you. I am here to help in any way!
Thank you, Erica! I wore my George Hacks t-shirt yesterday when writing the post — truly an example of how, if we give people tools to solve problems WITH people, they will.
Congratulations Susannah! Your book will be a gigantic step forward in a remarkably exciting new movement; your leadership adds a ton of value!
The Long Covid (post viral disease) ecosystem so far has been led by patients. But your readers will be the developing Long Covid (post viral) global ecosystem of patients, caregivers, clinicians, researchers, teachers, policy makers, and funders we need to transform caring, diagnosis, treatment, prevention, and cure for this disease.
Thanks, Barbara!
I agree — all the stakeholders in our health care system benefit from the insights generated by the peer health innovation pipeline.
Ryan Prior’s recent article for CNN captured this well:
Here’s how to design drug trials to defeat the next pandemic
https://www.cnn.com/2021/07/04/health/drug-trials-covid-pandemic/index.html
On Twitter someone asked why Long Covid is getting such a strong & quick response compared with the weak & slow response that ME/CFS has received. His reply is worth capturing here, as part of our conversation: “I think I would argue that the reason the LC approach is working is entirely *because* of ME/CFS and other advocates’ work.
@Rivkatweets put it so perfectly on PBS: PwME have the wisdom, and LC has the political capital to carry that hard-won msg to policy makers”
I agree and have been reflecting on how people with ME/CFS are the “lead users” of post-viral-disease patient-led research and advocacy. They broke the path that others can follow.
Well, you know my thoughts about your heart, mind, and soul since way back when, so there’s not much to add. I am proud of myself for keeping this news close to my vest successfully … but I knew it was only a matter of time.
You might find some synergy in Eric von Hippel’s work (also at MIT) on patient-led innovation; holler if you haven’t already connected!
Thanks, Dave! And yes, you have proved you can keep a secret
I love and am citing Eric von Hippel’s work — as well as his daughter Christiana’s: A Next Generation Assets-Based Public Health Intervention Development Model: The Public as Innovators.
Onward!