Inkwell: Authors and Artists

    
Inkwell welcomes health and technology strategist Susannah Fox to
discuss her new book, "Rebel Health: A Field Guide to the
Patient-Led Revolution in Medical Care." In the book, she focuses on
the health care needs of patients and caregivers and their
potentially greater role as partners in healthcare. She points out
the need for better communication and networking for anyone who has
difficulty navigating the American healthcare system. She draws on
her years of experience studying and working with the concepts of
participatory medicine and the empowered patient.

Susannah is a health and technology strategist. She is a former
Chief Technology Officer for the U.S. Department of Health and Human
Services, where she led an open data and innovation lab. She has
served as the entrepreneur-in-residence at the Robert Wood Johnson
Foundation and she directed the health portfolio at the Pew Research
Center's Internet Project.

Leading the discussion is Jon Lebkowsky, a co-founder of the Society
for Participatory Medicine and advocate for patient empowerment. Jon
is a digital culture maven, podcaster, and writer. He cohosts
several conferences on the WELL, including <inkwell.vue>. He has
written for publications including the Austin Chronicle, Whole Earth
Review, Mondo 2000, 21C, and the Worldchanging Blog. He was an
editor for FringeWare Review, bOING bOING, Factsheet Five, and
subdomain editor for the Millennium Whole Earth Catalog.
  

    
Welcome, Susannah. Can you begin by discussing the history "rebel
health" and the ways patient participation in healthcare has
evolved?
  

    
Thanks, Jon! 

The radical health movements I describe in Rebel Health have deep
roots. Today's activists are smart to build on the foundations built
by the people who have faced similar challenges in the past. 

People unfortunately find themselves outside the mainstream whether
bc of discrimination (like Black people in the Jim Crow South or
people living with disabilities) or bc their health challenge is
emerging (like HIV or Long Covid) or other reasons why someone may
feel alone and invisible to the health care system. The people I
call the rebels of health care band together to solve their own
problems or start making noise in order to attract attention and
become visible.

A few examples:
- Black Cross Nurses, founded in 1920 to provide first aid and
nutrition counseling to the Black community in the South
- AA, founded in 1935 as a peer-led substance use disorder recovery
program
- Fountain House, aimed at reducing social isolation, founded in
1948 by people living w serious mental illness
- La Leche League, founded in 1956 as a peer-led breastfeeding
support program
- Boston Women's Health Collective, founded in 1970 to publish
peer-led research (Our Bodies, Ourselves)
- Black Panther Party's 1971 peer-led initiative to test Black
people for sickle cell anemia
- Berkeley Center for Independent Living, founded in 1972 as a
peer-led community for people with disabilities

And so on! Name your favorite and tell us about it.

When I started looking at this phenomenon of what I came to call
peer-to-peer health care in the year 2000, I got advice from
"DocTom" Ferguson to spend time in communities of people living with
life-changing diagnoses. As he said, they are the artists, hackers,
and cowboys of health care, building civilizations on the frontier
of what was possible. This book is a way to bring all those field
notes into the public conversation about how we can learn from each
other and heal health care.
  

    
What changed bc of the internet, of course, is that people can
connect peer to peer and find each other online at any time of day,
on nearly any topic. The internet gave us access not only to
information, but also to each other. And that's been the accelerant
that has fueled the modern patient-, survivor-, caregiver-led
revolution in medical care.
  

    
Tell us about the work Tom Ferguson was doing in the early 2000s.
How important was his contribution to a patient-centered "rebel
health" movement?

(Parenthetically, I thought I'd add a link to the conversation we
had recently: <https://youtu.be/hAq9aXepxYI?si=zdDSB2JCchUk538_>.)
  

    
Tom was a visionary. He looked at the world as it was and saw the
inklings of what was to come -- and then helped make it happen,
faster. 

In the 1980s and 90s, Tom had written a dozen books about how people
can take care of their own health and he had served as the medical
editor of the Whole Earth Catalog. He had coined the term
"e-patient" to describe people who are empowered, engaged, and yes,
using electronic (what we now call digital) tools to pursue health &
well-being. He was an absolute legend, a pioneer on the frontiers of
cyberspace and health care. He gathered people around him, both in
person and virtually, introducing the artists & cowboys & hackers of
health care to each other, making sure that important connections
were made and stayed strong. He was a movement builder.

When I met him in person for the first time in January 2001, all I
knew was that he had somehow convinced the American Medical
Informatics Association to let Lee Rainie (my boss), Tom and I
deliver the keynote at their annual conference. This was the biggest
venue I'd ever spoken in (imagine a room so large that you can't see
the back rows of chairs) and this was to be the first public speech
I'd given about our health research. And I was just coming back from
maternity leave, having given birth to my first child the day after
I turned in the final report, titled btw, The Online Health Care
Revolution (20+ years later my book is titled Rebel Health :)

I now understand what an extraordinary honor it was to get the
keynote at AMIA. It was wonderfully typical of Tom to share the
microphone with us, two people he had only just met, did not know at
all, and yet had confidence that we would not fail him. Again, he
saw into the future, that Lee and I would become his colleagues and
he made it happen faster.

Tom was working on what he called a "white paper" about the
e-patient movement, even as he was being treated for multiple
myeloma (and helping to improve the care systems at the hospital, of
course). The paper was nearly but not quite finished when he died in
2006 and a group of us worked together to complete and publish it as
a PDF in 2009. 

Here's a link:
https://participatorymedicine.org/e-patients-white-paper/ 
  

    
How do you see the evolution of patient participation in healthcare
treatment since Tom came up with the concept of the e-patient?
  

    
I love this question because it lets me start with something my
grandmother always said: 

There is nothing new under the sun.

The connection that people feel when they find another person who
shares the same challenge, who has traveled the same path, is
MAGICAL whether it happens in person, by email, in the comments of a
newfangled social media post or on an old-fashioned BBS. So, in that
way, nothing has changed since Tom coined the phrase e-patient.

But wow oh wow so much progress has been made in terms of patient
access to medical journal articles, to their own medical records, to
their own data. Peer patients can now connect on dozens of platforms
and apps, in hundreds of thousands of online communities. It is a
default activity to be able to get a second opinion not only from
Dr. Google, but also Dr. Reddit (or the equivalent community
consult).

Access to genetic testing is another massive step forward for
e-patients in the last 25 years. Being able to find other people who
share a genetic disease, even one as rare as, for example NGY1
Deficiency, is astonishing and yet routine for rare disease
families.

Here's a story that captures what has changed: 

At a dinner party last weekend I met someone whose kid has had an
undiagnosed GI issue for years. Specialists, tests, nothing. Then
one day the kid said, "Hey Siri" and described their symptoms. Siri
correctly diagnosed the issue: Retrograde Cricopharyngeus
Dysfunction (aka No Burp syndrome). The family is now connected with
an online community of other people with the same condition and are
seeking the recommended treatment. 

(They were extremely surprised when I said I knew what it was - and
had written about it - but that's only because they didn't know yet
that I'm like a jukebox of e-patient stories.)
  

    
I'm aware that physicians are sometimes concerned that patients will
misunderstand or misuse information they find online. How do we
address that concern as we advocate for patients to have more
information about their conditions, and a greater role in
healthcare?
  

    
Since science is always evolving and being revised, everyone needs
to understand that they should fact-check and stay alert to changes.


Btw that includes clinicians. Clinicians themselves can,
unfortunately, be sources of misinformation due to not staying up to
date on evolving topics and treatments.

We see that now in Covid times, of course. ME/CFS is another
contested area that requires vigilance from all stakeholders.
Further back, Dr. Geeta Nayyar’s book Dead Wrong chronicles the
recent history of HIV and the misinformation that cost people’s
lives. Science progressed, scientific communication improved, and
misinformation about HIV is finally abating, at least among most
populations.

Misinformation did not start because of the internet but it spreads
faster because of it. Since the sources are diverse, we need a
diverse response. Clinicians need to step into their power by
communicating about science clearly and publicly. Policymakers
should make open access to medical journals a priority – let’s flood
the zone with science. Patients, survivors, and caregivers should
learn how to fact check and only share what they know to be true. 

What I focus on in my book is the opportunity presented by the group
of people I call Networkers. They form and nurture communities. They
pool resources, including information. Let's give them what they
need to spread the good stuff. I cite studies that show how healthy
communities stamp out bad, outdated advice like an immune system
stamping out a virus. Let's support peer-led communities as a
bulwark against the rising tide of misinformation.
  

    
How is misinformation handled in effective peer-led communities? 
  

    
Jumping in - I'll let you handle Jon's opening volley, but I wanted
to say I'm many of the roles you mention in the book. Years ago I
was on the team that created Share Your Story - a community for
parents w/ kids in the neonatal intensive care unit (NICU), and I
saw first hand the power. 

(https://fullcirc.com/2005/11/01/share-the-birth-of-a-march-of-dimes-online-com
munity/  https://www.fullcirc.com/weblog/2006/03/are-we-strangers-preemie-parents-story
.htm   https://www.fullcirc.com/weblog/2005/08/share-your-story-gets-notice.htm )

Fast forward today and I'm partaking in patient communities around
osteoporosis, a condition that all of my PCPs are amazingly
undereducated on, despite the commonness of the condition. I am
seeing myself in many of the pages of the book. Nuff to say, THANK
YOU!
  

    
I am a cancer patient.  For the last 3 and a half years I have been
treated for kidney and then bladder cancer. The treatments are
harder on me then the cancer at this point.I do read the facebook
support groups at first to learn the language of the medical world. 
Without those words it is hard to have discussions with the doctors.


I feel encouraged by the online support groups.  The COVID epidemic
knocked out our local support groups. I miss having live support
groups.

The biggest issues for me now is the difficulty in talking to the
medical staff when I am not having an appointment.  They live behind
closed locked doors with administrative staff protecting them.

The second issue is not knowing what I don't know. 

I do keep a list of the treatments I have turned down because they
didn't make sense. It is difficult being a patient in these times.  
  

    
Glad to see you here, Kathy. I agree that it's difficult being a
patient, at least because it's hard being a medical provider when
your work is governed by timekeepers and scorekeepers.

But Kathy, didn't your protests lead your local hospital to start
giving care plans to patients receiving radiation, when before they
seemed to just blast away until they felt like stopping? That is
being a good advocate for yourself in a way that helps others.
  

    
Yes that is so twenty years ago I was receiving radiation therapy
for uterine cancer, for 6 weeks. Toward the end I ask the doctor for
a care plan to learn how much radiation I had have.  I had been
reading about the side effects in the hospital library.  He said he
could not give it to me without speaking to his lawyer first. 

I went to the members of the bioethics hospital team and they were
horrified.  Yes they did close down the clinic for a day to create a
care plan form protocol.  I worked with the radiation nurse on what
to include in the form.

I have been reading Susannah Fox book this week and it is
interesting but difficult for me to use when I am in the middle of
chemo therapy.
  

    
This conversation is world-readable, i.e. can be read by anyone on
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two week discussion. Here's a short link for access:
<https://tinyurl.com/susannah-fox>. The full link is
<https://people.well.com/conf/inkwell.vue/topics/543/Susannah-Fox-Rebel-Health-
page01.html>.  Please share on social media or with anyone who might be interested in reading.

If you're reading this conversation, and you're not a member of the
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well.com, and we'll post it here.

If you're not a member of the WELL, but you'd like to participate in
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<https://www.well.com/join/>  The WELL is an online conferencing
system and a virtual community with ongoing intelligent
conversations about many subjects - a great alternative to drive-by
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This conversation will last for at least two weeks, through May 6,
2024. In order to read the whole conversation, we encourage you to
return regularly and, since the discussion will grow into multiple
pages, use the pager (dropdown at the top and the bottom of the
page).
  

    
> ME/CFS is another contested area that requires vigilance from all
stakeholders.

Susannah, welcome! Have you been in contact with Julie Rehmeyer
<jrehmeyer> on her ME/CFS research and activism? I haven't seen her
on the WELL since February.
  

    
I just pinged Julie. She said she'd try to check in here.
  

    
<jonl> asked: How is misinformation handled in effective peer-led
communities? 

It depends on the interface of course, but in some communities an
admin will delete posts that contain bad advice/misinformation. In
others, those posts will get downvoted. And in others people will
comment/reply with facts and links to evidence refuting
misinformation. 
  

    
Kathy, that is AWESOME that you got the clinic to stop blasting
people with radiation in an outdated attempt to treat them.
Patients, survivors, and caregivers know things as individuals and
even more so by pooling information that clinicians and scientists
do not know -- or do not yet acknowledge. My book is an attempt to
lift up stories like these and show that if we listen to the rebels
of health care, we will all benefit.

Sending you gentle hugs and positive energy as you go through
treatment. One feature of my book are the summary boxes at the end
of each chapter to help people with brain fog remember what they
just read and to help people dive back in when they pick the book
back up after a break.
  

    
Those summaries are great, wish every author included something like
that.

Who did you see as your audience for the book? How did you expect to
see it being used?
  

    
Nancy, I love that you cut your teeth (as it were) building
community around preemies and now use those skills for osteoporosis!
There are pockets of progress everywhere -- thank you for doing the
work you're doing to forge ahead for your peers. 

It's no surprise to me that the WELL is full of Networkers :)
  

    
Thanks, Jon! The summary boxes are an example of how I designed my
book for two publics:

1) Patients, caregivers, and other people going thru hard times
2) Health care leaders who are pressed for time

In both cases, they appreciate good stories (which start every
chapter), summary boxes (which end every chapter), quick actionable
tips (in boxes throughout). And I kept the overall length of the
book relatively short (200 pages) so it can be read on a rainy day
or cross-country flight.

I hope everyone uses the book as a guide for stepping into their
power as change agents, wherever they find themselves in the maze of
health care.
  

    
Following up on <3>, can you say more about how the Internet changed
the healthcare experience for patients? And how the "peer to peer"
concept applies to healthcare?
  

    
Re <16> yes, I deeply appreciate the work that <jrehmeyer> does in
shining a light on the path toward truth. Here's an article she
wrote that includes a section on how reporters should look to
patients/people with lived experience as experts when writing about
contested illnesses like ME/CFS, Long Covid, etc:

https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sen
sitivity-on-contested-illnesses/

Some of the principles discussed in that article are echoed and
amplified in the work that the Patient-Led Research Collaborative
did with the Council of Medical Specialty Societies to develop
"scorecards" to  support capacity building and sustainability models
for patient-led research:

https://cmss.org/patient-led-research-integration/

Re <3> and how the internet changed patients' experiences with
health care:

At the most basic level, the internet helped shift the power
imbalance that exists when a small group of people have access to
information and data, yet a large group needs (craves!) that access.


Here I'm talking about how clinicians held all the cards -- they
wrote notes about people in their medical records and kept that to
themselves (now we have OpenNotes); they could read medical journals
and attend conferences (now we have PubMed and social platforms
where we can follow scientific conversations and even virtually
attend conferences); etc.

Peer-to-peer trading of info is a longstanding practice among
clinicians (see one, do one, teach one) and now, thanks to the
internet, patients can trade experiences & info with each other.

In writing my book I realized that I needed to find a way to
describe the major activities of people who are part of the peer-led
revolution in medical care, so I came up with 4 archetypes:

Seekers who go on the hunt for information
Networkers who form and learn in communities
Solvers who attack problems (hardware like devices, but also
systems)
Champions who help scale grassroots ideas by providing access to
mainstream resources

I'd love to hear from people about where they've seen peer to peer
health care happening and if the archetypes resonate. 
  

    
Thanks for the invite to share some stories. On FB, where, alas, I
get most of my patient community experiences (lazy? or just tired?
:-) I see a variety of patterns. When I read back, the start of most
of the ones I have been hanging out in have been exceedingly kind
and gracious, with very little stridency. People stay in the lane of
the person/people who set up the group. 

Over time, the lanes expand, diverge or may even go into adversarial
roads. This is more than I remember in the
long-time-ago-and-mostly-gone email groups and web discussions.
There is more (and repetitive) insertion to what feel like
commercial pitches or endorsements and this is only going to
increase with things like META's AIs that are, uninvited, coming
into FB groups (yes, you can and I recommend you DO turn it off if
you are a group admin) 

The work it takes the group admin to keep focus (this is about
exercise and Osteoporosis, not medication) increases. Admins get
worn out, close groups, or keep trying. Some of them endure more
than I can imagine, all as a gift. Yes, it helps some folks attract
business which is fine in some ways/cases. 

So there is this huge opportunity running right alongside increasing
challenges to support patient peer groups. And if bots amplify
this... well, we need viable alternatives to the big powers of META
and others. (I hate to say it, but some days it feels like the drug
companies are in there, messing around. Maybe I'm becoming a
conspiracy theorist).

And I think back to the amazing community that was Share Your Story
and feel the heartbreak that it was shut down and reduced to static,
sanitized stories by the March of Dimes. 

SO, after my long winded rant, what might we, as the "patients" do
to protect our spaces? How can we keep the space for the seekers,
networkers, solvers and champions?