e-Patient Dave

Power to the Patient!

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Patient Communities – a starter list

Last updated 4/28/2019. See others in comments below that I haven’t added here yet.

There are many, many more communities than the few listed below. Post them in a comment, and I’ll add them here when I can.

Special note for rare diseases: NORD (National Org of Rare Diseases) and GARD (Genetic and Rare Disease Info Center) are good places to start. Friend Larry Fagan sent this GARD tutorial on hunting down specialists when a disease is so rare that docs are hard to find.)

Please note:
I don’t have the resources to check these out myself.
As with everything you do online, “shop wisely.”

And my advice is: Never assume that any one source is perfect –
no patient community, no book, no web site, no journal article, no physician, no nothing.
As ACOR founder Gilles Frydman said, “All knowledge is in constant beta.”

You are responsible for the information you gather;
check and re-check.

Kidney cancer:

ACOR’s kidney cancer group is now at SmartPatients.com.
Robin Martinez, who was the heart and soul moderator of the ACOR group I joined,
now works at SmartPatients. 

Lists of communities, lists of lists:

  • ACOR: The home page has a master list of ACOR cancer patient communities.
    • An ACOR community is not web based; it’s just an email list (Listserv®).
      • Old method (still works): You subscribe and unsubscribe by email.
    • All ACOR lists work the same; as you’ll see, each has a name, e.g. KIDNEY-ONC for kidney oncology and NHL for Non-Hodgkins Lymphoma. Look for your cancer, and click it.
    • You subscribe or unsubscribe to an ACOR list by simply sending a special email to a particular address. Instructions are on each disease’s page.
    • For instance, here’s what it says for non-Hodgkins lymphoma (the “NHL” list):
      “To subscribe, send mail to LISTSERV@LISTSERV.ACOR.ORG
      with the command (paste it!):    SUBSCRIBE NHL”
    • ACOR has communities for many cancers; some groups are big and busy, some are small and not very active.
  • Inspire.com has a large list of communities.
  • Patients Like Me used to be primarily for some neurological conditions but their fabulous software is now available for any disease.
  • CureTogether has communities for a number of conditions
  • Webicina is a great website that’s a growing library of resources for e-patients.
    • Here is their list of patient community sites. It doesn’t yet identify which cancers each site supports, so you have to open each one and look. (Disclosure: I’m an unpaid advisor to this site.)
  • Andrew Spong / patient communities is a StumbleUpon list curated by U.K. friend Andrew Spong.
  • Dose of Digital has a list.
  • Commenter Elaine Finn added her list on Patient Loving Care.
  • RareShare, “a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders..”
  • “CancerConnect.com … offers comprehensive cancer information, organized by disease and stage. It is also a free social network for patients, survivors, and caregivers. Members can join one or more of the many ‘communities’ offered.” – from Laurie in a comment below
  • Social Medicine, dozens of disease specific communities.

Specific diseases and conditions: (more or less alphabetically)

  • Breast cancer: There are many breast cancer communities. Two to know:
    • The most amazing to me is BCSM.org, a non-profit that arose out of the weekly #BCSM Breast Cancer Social Media twitter chats. 100% patient-centered and patient-driven, with expert professional help from generous oncologists.
    • My BC Team
    • Be aware that Komen’s annual “Pinktober” marathon has much controversy around it. Here’s the Wikipedia discussion. As always, have your eyes open.
  • Colon cancer: Colontown at Chris4Life.org (foundation)
  • Crohn’s Disease (and sometimes colitis):
    • Crohnology.com (thanks Ryan Witt)
    • Crohnsforum.com (Ken Spriggs et al)
    • Crohn’s on Angelfire.com: list of Crohn’s organizations by continent (via Kathi Apostolidis)
    • ISCC Irish Society for Crohn’s and Colitis (via Kathi again)
  • Depression: See Mental Health below.
  • Diabetes:
    Caveat: Type 1 diabetes (auto-immune, typically diagnosed in childhood) and Type 2 diabetes (an insulin uptake deficiency, typically acquired at 50+) are two different things. Be sure you know what you’re looking at – many articles say “diabetes” when they only mean Type 1, or “diabetes prevention,” which is only possible with Type 2. Also, pre-diabetes is a loosely defined condition with no online community that I can find – look into the Diabetes Prevention Program (DPP). It worked for me, at my local YMCA.

    • DiabetesMine, the original, created by Amy Tenderich and now part of HealthLine
    • TCOYD (Take Care of Your Diabetes), created and run by Steve Edelman MD (a Type 1 patient himself)
    • diaTribe, an extraordinary research and analysis outfit run by Kelly Close
    • The amazing TuDiabetes – “community of people touched by diabetes” at Diabetes Hands Foundation
    • For parents of children with diabetes:
  • Endometrial cancer: see the responses on this post.
  • Mantle Cell Lymphoma (MCL): My almost-college-classmate Larry Fagan, MD, PhD manages ACOR’s MCL list and has created this list of tips and resources.
  • Mental Health:
    • PsychCentral is one of the oldest and best managed peer communities anywhere, on any conditions.
    • BigFeels.Club is a brand new peer-to-peer site just started in 2018, growing like a house afire.
  • Look for a clearly labeled About section that says who they are and where the money comes from

    Mesothelioma: There are lots of liability lawsuits about this asbestos-related condition, so be aware of websites that are funded by attorneys who may only be looking for new lawsuits where they can take a cut. On the other hand, some such sites spend money to produce lists of resources that may truly be useful to you. As always:

    • Keep your eyes open, think for yourself; be informed and engaged (e-patients)
    • Never let anyone pressure you into anything.
    • Any ethical site will have a prominent “About” page, like the one at right from the MARF site, saying who they are and where the money comes from. (Fine print at bottom of page doesn’t count – that’s slimy.)
    • Having said that, here are some sites:
  • Multiple Sclerosis: Inspire.com’s MS community
  • Parkinson’s Disease: see this post (Jan. 2012) with resources from Peter Schmidt of the National Parkinson Foundation.
  • Preeclampsia Forum for patients that have or had preeclampsia or other hypertensive diseases in pregnancy. The website is informative and the forum (link below) is a great support and information network. – from SPM member Ileana Balcu
  • Prostate cancer: 
    • UsToo.org is specific to prostate cancer.
    • Health Unlocked is another great “community of communities.” (A friend just told me the patients in his prostate cancer community there often know things his doctors don’t.)
  • Sarcoma: See discussion in this Nov. 2013 blog post.

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Places to find clinical trials:

When an accepted treatment doesn’t exist, or has failed, clinical trials for unreleased drugs can offer additional options. Some options:

Additional resources about many diseases:

SPM member and friend Larry Fagan MD PhD writes, “I received this info from the MedlinePlus folks at the NLM” [National Library of Medicine]:

He adds, “Elsewhere at NIH, these resources may also be helpful:”

An editorial comment about the above:

MedlinePlus uses specific criteria to determine which websites they link to for patient oriented medical information. Because of the home grown nature of some of the online communities many websites may not meet those guidelines, even though they can contain very useful information. (See Larry Fagan’s post on the NLM blog.)

Of course the internet is huge (duh) and nobody has a comprehensive list of websites, and besides, it’ll change by your next meal. So I’m publishing the list above, and as I said at the top, it has the following caveats:

Never assume that any one source is perfect –
no patient community, no book, no web site, no journal article, no physician, no nothing.
As ACOR founder Gilles Frydman said, “All knowledge is in constant beta.”

You are responsible for the information you gather;
check and re-check.

About

e-Patient Dave. Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0
Click to access high res version on Wikipedia. Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0.

Quick links:

Cancer survivor “e-Patient Dave” is an international keynote speaker on healthcare who consistently earns extraordinary ratings by understanding each audience and working closely with each client to define their unique “home run.” Audiences have ranged from the Institute for Healthcare Improvement to the Danish Patient Safety Association and the Israel Internet Society. His compelling TEDx Talk “Let Patients Help” was for years in the top half of most-watched TED talks of all time.

Standard Topics:

  • Patient Engagement / Patient Empowerment / Patient Experience
  • Superpatients: Patients who extend science when all other options are gone
  • Healthcare Consumerism: a businessman’s view of the consumer side of healthcare (I published an RFP to shop for skin cancer treatments!)
  • Inspiration / Motivation / Attitude / Mind Power
  • Facing Death (book: Facing Death – With Hope)

See videos of past talks, testimonials, and list of past engagements.

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Dave’s Story

“e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.

He received great treatment at Boston’s Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions continued to shrink for years after the treatment ended.

Today: Advocate and Activist

An accomplished speaker and writer in his professional life before his illness, today Dave is actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient. This is revolutionizing the relationship between patient and health care providers, which in turn will impact insurance, careers/jobs, quality of life and the distribution of finances across the entire spectrum of health care.

“What’s an e-Patient?”

A year after the diagnosis Dave was invited by his primary physician, Dr. Danny Sands, to join the annual retreat of the e-Patient Scholars Working Group. Founded by the late Tom Ferguson MD, a true visionary, the group consists of pioneers, both medical and lay, who have been quietly (and not so quietly) altering the balance of power in healthcare, demonstrating that as the internet brings patients together with information and with each other, a new world of Participatory Medicine is evolving, in which patients become potent agents in creating and managing their own health, in partnership with physicians.

Tom Ferguson said e-patients are empowered, engaged, equipped and enabled. Dave immediately saw himself as a match, became an active blogger on e-patients.net, and took on educating himself as much as he could. He went part-time in his day job in 2009, and left industry entirely in 2010 to devote himself full-time to healthcare.

“This is the first time in my life I’ve felt I have a calling,” says Dave, “something I can’t get away from: it’s what I need to do. I’ve had plenty of fulfilling jobs in a great career, but not a calling. This is it.”

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Bio for speaking engagements

Note to clients: In publishing conference materials, or introducing me to your audience at the event, I urge you not to focus primarily on my biographical details below; tell them why you invited me to take up their time at this event. I’m presuming there was a specific reason – that I’m not just a necessary evil to fill your agenda. So, share with your audience what called to you, and why you believe it’ll be relevant to their lives!

Having said that, you’re welcome to select from this formal bio.

Full bio, 271 words, updated 2019:

Dave deBronkart, known on the internet as e-Patient Dave, is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. An accomplished speaker in his professional life before cancer, he is today the best-known spokesman for the patient engagement movement, attending over 650 conferences and policy meetings in 26 countries, including testifying in Washington for patient access to the medical record under Meaningful Use.

A co-founder and chair emeritus of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Patient Experience Journal,  iHealthBeat, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better,” and he’s appeared on the cover of Healthcare IT News and the Australian GP magazine Good Practice.

Dave’s TED Talk Let Patients Help went viral, and for years was in the top half of the most viewed TED Talks of all time with over a half million views; volunteers have added subtitles in 26 languages, indicating the global appeal of his message. In 2012 the National Library of Medicine announced that it’s capturing his blog in its History of Medicine Division, and he was the Mayo Clinic’s 2015 Visiting Professor in Internal Medicine.