Patient Communities

Last updated 11/2/2013. 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.

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: Here’s 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; here’s one: My BC Team
  • 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)
  • Endometrial cancer: see the responses on this post.
  • 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

________

Addition suggested in comments below:

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

47 comments to Pt. Communities

  • Dave,

    I’d be delight if you’d list our clinical trial index as a resource. We don’t attempt to monetize anything. Our privacy policy is simple, straight forward and as it should be. http://clinicaltrialselect.org/privacy.php

    Thank you.

    Etienne Taylor

  • e-Patient Dave

    Comments submitted on another page. (All suggestions have been added to the post above.)

    Daniel Hooker
    May 4th, 2011 at 10:00 pm

    This page at Dose of Digital does track of patient communities. http://www.doseofdigital.com/healthcare-pharma-social-media-wiki/

    Though it looks to be a thorough list, it isn’t searchable (in a database sense) and doesn’t break down by supported disease/condition. What I do like about the list is that it identifies any controlling pharmaceutical interest in the community–something that often isn’t obvious from the sites themselves.

    It would be great if we could figure out solution for getting what we need out of a database like this one. I do wonder if perhaps we could crowdsource it by contributing to Wikipedia or another public tool? I’d love to see something like this take off.

    ———

    Andrew Spong
    May 5th, 2011 at 9:45 am
    Hi Dave

    I curate a list of patient communities on StumbleUpon:

    http://www.stumbleupon.com/stumbler/andrewspong/tag/patient-community/?grid

    Andrew
    @andrewspong

  • Best one I know: http://patientslikeme.com/
    http://www.caringbridge.org/ is a nice one, too.

    PS – Dave, this page is ONE example of many values patients want, ask for and need. I think we need ONE, “organized gang” of patients.. something like a “Society for Patient Interests” – to focus on only “patient” needs (in resources, organizing of resources, advocacy, education, empowerment, etc). This could be a project of the Society of Participatory Medicine, much like e-patients.net is. What do we think? How can current patient leaders spearhead such organization, if it’s agreed to be useful for patients?

    PS,2 – Is this an idea I should propose here or elsewhere? I don’t want to crowd up this page with this discussion…

    • e-Patient Dave

      Ryan,

      I used Caringbridge myself, but it’s not a community, right? It’s what you might call an individual journal or blog site, but not a place where people with a disease congregate and compare notes.

      PatientsLikeMe most definitely is though.

      You can propose anything you want on this site, but it has a smaller audience than the members’ listserv and the Society for Participatory Medicine…:) I doubt that one single massive patient group (which would, ultimately, include *everyone*) would be ideal for everyone, but who knows, others might agree.

      My personal criterion is, can any given patient find info that will make a difference to them, and if so, how easy is it?

      p.s. Stop thinking your comments are clogging anything up! :) Speak up! Express yourself! Be empowered.

    • e-Patient Dave

      btw, Ryan, revisiting your May 9 suggestion for a one-stop list of patient resources – why don’t you go to the Society for Participatory Medicine’s member listserv (I presume you’re a member) and propose starting that??

      • Excellent question, my friend! Once I get settled with finding a salaried job and the move (family completes moving into new place this Monday!), I’m planning to post a few ideas lingering in my head and get more active in the Society and patient advocacy/empowerment.

        Quick Question, btw: I’m on the Patient Needs WG for Patients 2.0 / Health 2.0 in SF this year. We’re trying to discover what Patients need right now is. Any ideas? =) I like the idea of continuing along the patient empowerment movement, by striving to define what we feel ‘empowerment’ should be and needs to encompass. I’m going to post this question on the listserv, as well.

  • High five and sincere thanks for adding Encephalitis Global to your list of patient communities, Dave!

    I’m sure you’re familiar with one of my favourite phrases… “I’m dancing as fast as I can!” Well, that dance somehow gets a bit easier when a friend joins in.

    Again, our sincere thanks to you!

  • Jan Sevcik

    Here is a consumer health portal that aggregates highly focused content on both traditional and alternative medical treatments for chronic diseases. The first disease indexed contains over 6,000 medical journal articles broken down into the top 200+ categories for ulcerative colitis. There will be another 8 or so diseases added in the next three to four months.

    What is unique about this index is that it was compiled using consumer search data plus over 20 custom medical databases (and a slew of algorithms) so that it represents the collective wisdom of millions of data points from patients and physicians. The information is near real time (updated a couple of times a month).

    This is a new data content approach that aims to solve a few problems: a) Patients do not always know what questions to even ask or topics to search for b) Content sites become stale as information in medicine changes all of the time c) Information needs to be very focused and if there are only four articles on the topic, this approach can find those four articles and not a 1,000 unrelated articles.

    This page is the disease overview http://mymedicalfinder.com/all-uc-topics and homepage is here http://mymedicalfinder.com .

    In full disclosure, I am the co-founder. There is no commercial content indexed. Feedback is definitely welcome.

    Thank you.

  • Matt Frandsen

    Dave,

    We’d love it if you’d post a link to The Better Way Back. It’s a growing patient community for those faced with the decision to have spine surgery. We put those who have questions in contact with others who have undergone similar or identical procedures. Thanks!

    • Hi Matt – what sort of organization is this? From the website it appears to be a vendor / provider group. No problem with that of course – just need to be clear, and know what category to put it in.

      Also, what’s the participatory medicine aspect of the service?

    • e-Patient Dave

      Well, Matt didn’t respond to my question, and in a separate post a LOT of docs said to be really cautious about back surgery. I clicked Matt’s link and then About Us, and although it’s a .org, it’s backed by vendors. His lack of dialog leads me to remove his URL.

      People, social media is for dialog, not for post-and-run.

  • Here’s a patient community for people with crohn’s disease: http://crohnology.com/

  • Laurie

    CancerConnect.com is the best of both worlds. It 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.

  • ileana

    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

    http://preeclampsia.org/forum/

  • Brhamesh

    Hey,

    There is a nice community regarding ‘Eye infections and diseases’ at Inspire.com. I have posted on it looking for answers to one of the condition I am encountering. It would be great if anyone could help in this.

    Link: http://www.inspire.com/groups/eye-infections-and-diseases/discussion/hot-and-dry-eye/

    Thank you,

  • WhatNext.com is a new online cancer support network developed with the participation of the American Cancer Society. WhatNext instantly connects people touch by cancer – based on a specific diagnosis – to peers and vetted resources that can help. We support patients, caregivers, survivors and loved ones.

    At WhatNext, people are sharing the details of their cancer journeys as a way to help those who are newly diagnosed know what they might expect, what they might need and where they can get what they need.

    Dave, I hope you’ll be able to list us. We would love for you to stop by and hopefully you’ll be able to share your incredible journey when you have some time. We’d love to hear your thoughts on how we’re doing!

    Link: WhatNext.com

    Thanks!
    Karen

  • Thanks for having created this website, Dave!

    The Amazon-L listserv is a community of women with breast cancer who have chosen NOT to do conventional treatment. For some, it’s a conscious choice, made after much research and soul-searching. Others, such as those with multiple chemical sensitivities, feel that it’s the only route available to them. Still others did standard treatment that failed them, so now they walk the alternative side of the medical street.

    Our listserv exists primarily to support those using or wanting to use alternatives in order to heal. We do an enormous amount of research, mostly from alternative resources, but we also share conventional research related to a topic we’ve been discussing, or which surprise us. We discuss the research papers we find, seek other papers to corroborate or refute what we’ve found, and in some cases contact the researchers directly in our search to learn what might be useful against our disease. We share what our alternative practitioners have taught us, and support one another throughout.

    We welcome those with breast cancer [and/or family members] who are interested in learning more about and/or following any of the
    alternative protocols paths which have been successful against this
    disease.

    My own personal hope is that any woman who finds a lump in a breast
    will join us before any kind of biopsy is done — that is, even before she knows if her lump is cancerous. That’s because all biopsies are not equal, and there are ways other than surgical to determine if a lump is cancerous or not.

    Thanks again for being here, Dave!

    Warmly,
    Carole Berlin
    Co-administrator of the Amazon-Alternatives Listserv

    You can join by following the directions on our website
    [www.amazon-alternatives.org] or by sending a message to the Listserv address
    LISTSERV@LISTSERV.TECHNION.AC.IL
    Leave the subject line blank
    In the body of the message type SUBSCRIBE AMAZON-L Your Name
    [using your first and last names in place of "Your Name"]

  • Hi, Dave

    It’s been awhile since we spoke, but healthetreatment has gained terrific momentum in the past year, too.

    Healthetreatment collects and displays self-reported health statistics and user-generated health content. Our mission is to help people around the world find new ways to feel better; to have a more productive conversation with their healthcare provider; and to have a better chance at an improved quality of life.

    We’d be honored to be included in your list.

    Thanks for the consideration.

  • Ivan Lobban

    encephalitis is really deadly if it is not treated early.:

    Have a look at the freshest write-up at our personal web-site
    http://www.healthmedicinecentral.com/where-is-your-gallbladder/

  • Hello Dave – I appreciate what you are giving the world in regards to patient centered care and wellness. I am the founder of Health-Insurance-Forum.com I have been a medical biller for the past 5 years, after taking courses in medical coding and billing. At Health-Insurance-Forum.com the goal is to clarify and increase the transparency of the health insurance industry for patients as well as empower patients and encourage questions. With Health Insurance you can’t take anything at face value and we believe it should be treated as any other consumer industry – where people/patients/consumers are able to ask about things they don’t understand in an open discussion forum.

    I have added your site to the HIF resources page.

  • Hi Dave,

    Thanks for pulling together this list. Two more for you to add to the disease-specific. MyAutismTeam.com is a social network for parents of kids with autism. It has over 38,000 parents on it from all over the US and Canada. MyBCTeam.com is a social network for women who have been diagnosed (at any point in their life) with breast cancer. It launched 5 months ago and already has over 3,500 women. You can think about both of these communities as a cross between Facebook + Yelp + Pinterest -but focused specifically on each condition. They are free.

    Many thanks!
    eric

  • e-Patient Dave

    Are there online communities for people with celiac disease (Wikipedia)?

    I’m compiling resources for someone I met, who was unaware that online patient communities exist. Suggestions, anyone?

    Various thoughts –

    An informative short post on the Cases Blog, run by Twitter friend @DrVes: “3 million Americans are living with celiac disease” with a great 3:29 “infographic” style YouTube from the U of Chicago. (The first half is information, the second is a commercial about their work – including their goal of finding a cure in 10-15 years. That’s valuable to patients to know, because there’s also talk about a possible pill to treat it … a pill would be great for those who don’t want to live with a gluten free diet, but a cure is the best of all worlds.)

    — I’m not clear about the relatedness (or not) of Crohn’s Disease, other IBD (irritable bowel disease) and everything else. I know about the ImproveCareNow “learning health system” for children with IBD, but celiac isn’t included.

    — On the C3N site I found this discussion among some patients. It’s the internet in all its glory: misspellings and sloppiness with valuable information in the stream. Real people exchanging real experiences, including their feelings.

    — I’ve also started using Symplur.com’s hashtag feature to find Twitter discussions. Here’s the one for #celiac.

    — A related hashtag is #glutenfree, with a ton of traffic – over 1500 tweets a day, largely about “GF” foods (gluten free).

  • e-Patient Dave

    Twitter magic -

    From @CRGonzalez: Try Inspire.com @TeamInspire

    And a few minutes later that led to this, FROM @TeamInspire:
    Check out the Inspire/Celiac Central Support Community… We partner with @CeliacAwareness.

  • Good afternoon,

    We are the UK’s charity for people with coeliac disease and dermatitis herpetiformis.

    We have Facebook and Twitter pages available at http://www.facebook.com/CoeliacUK and http://www.twitter.com/Coeliac_UK

    Both of our social media channels have a great following and are places where help and guidance, ideas, recipes and thoughts are all shared on a daily basis.

    Please take a look and visit our website – http://www.coeliac.org.uk – for more information.

    • e-Patient Dave

      Thanks! Looks like useful resources – do you have patient community there, discussing things? I couldn’t tell, at first look.

  • Hi Dave. Our social media channel participants tend to be a mix of patients, friends and families of those with coeliac disease and those looking for a diagnosis, but we don’t have any statistics on number of patients.

  • kgapo

    you may also add European Cancer Patient Coalition in Brussels Belgium a European umbrella organization with 340 members in 42 countries (USA too!!) our website is under reconstruction http://www.ecpc-online.com

  • Admiring the persistence you put into your website and in depth
    information you provide. It’s great to come across a blog every once in a while that isn’t the
    same old rehashed material. Great read! I’ve bookmarked your site and I’m including your RSS feeds to my Google account.

    My homepage company of heroes 2 patch cracked (Valarie)

  • Jessica

    Hi Dave -looking for a community discussing the treatment of uveitis. My husband suffers from this condition. Specialist after specialist canno tell us what has caused this and he has been on prednisone and methotrexate for almost 10 years.
    Thanks Dave for all you do, the work you do is truly amazing.

  • Mia

    Dave and friends:
    My father has just been diagnosed with AML (Acute myeloid leukemia) and I am wondering if there are any online patient communities out there I can connect him with? He is going in to City of Hope today for additional diagnostic testing and to see what his treatment will be and when it will start. I’ve heard this disease is aggressive so am hoping that this has been caught early. I also wanted to get engaged as a family member so any recommendations for sites, books, articles to read would be greatly appreciated.
    Thanks!

  • Appreciated Dave… Encephalitis Global’s forum has been associated with Inspire since 2008; we continue to be delighted with their management style.

  • There’s an organization called CHERUBS for people born with Congenital Diaphragmatic Hernia. It was started as a way for our parents to connect but has since grown as a way for survivors to connect as well. They hold fundraisers for research and overall bring awareness.

  • e-Patient Dave

    Thanks! I’ll add it to the list the next time I’m in there.

  • Elizabeth Riggs

    You might want to add rawarrior.com!
    Cheerio!
    Elizabeth Riggs

  • If Facebook communities can be included, our public site on Facebook is facebook.com/clusterheadachesupport. From there, members can join a private Facebook community as well.

    Thanks, Dave.

    • e-Patient Dave

      Of course – thank you!

      What, you think I’d say “Nice try, but I don’t think patients should be allowed to connect on Facebook”? Ha ha ha ha ha … :-)

      Thanks very much. I need to get in to the back end of this page and edit the list!

  • Hi Dave,
    There’s a nonprofit organization called Human Health Project (HHP).
    HHP provides a free, noncommercial forum for individuals anywhere to connect and build community while supporting each other. We believe health of individuals worldwide is a human right for all. (I’m a current volunteer.)

  • Dave

    I have found Inspire.com to have the best community for my rare cancer, Pancreatic Neuroendocrine Tumor. Over 500 people which is pretty significant considering. And very active with many daily updates from many of them.

  • Dave

    Hey e-Patient Dave, What do you know about patient portals with physician offices? Looks like with Blue Button we can easily view our medical data, download it or send it to another doctor…at least in some physician offices.

    • e-Patient Dave

      What do you mean by “what do I know”? I advocate for the cause in speeches and blogging, and I write books, and I’m trying to do some consulting work. So, sadly, I don’t have nearly enough capacity to study what current reality is on the front lines … wish I did!

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