I’m writing an article and would love to tap into this community’s knowledge.
I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.
Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.
Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?
Comments, please!
http://www.text4baby.org/ is one that is used by a lot of organizations, they’re not directly texted by a nurse/doc, but they get health reminders for important services.
In our organization alone, we’re looking at nearly a million members affected by this, and I’m positive there are lots of other healthcare companies using this.
One of the questions that inevitably comes up with these is efficacy of the contact. Social media may seem great, but if it doesn’t actually change behavior, then so what?
See http://www.healthmanagement.com/files/Chronic%20Disease%20Savings%20Report%20final.pdf for an interesting look at this, suggesting that face-to-face interaction is really where it’s at, with the possible exception of pregnancy.
Thanks, Jon!
The “so what” question is incredibly important. I’m very interested in examples of impact, such as the one highlighted in this JoPM article:
http://www.jopm.org/evidence/case-studies/2011/06/10/the-cancer-supportive-care-model-a-patient-partnered-paradigm-shift-in-health-care-delivery/
No fancy tools, necessarily, but a lot of listening to what patients and families want and are capable of doing.
This could be an update to the discussion. Nowadays, people uses mobile apps to connect doctors and patients. It all depend on what is the desired feature. Since this is an old article I think maybe you should talk about what is happening on 2016.
Cushing’s Help is a patient-led group which boasts over 8,000 members on it’s message boards at http://cushings.invisionzone.com/index.php
In the world of Cushing’s Syndrome/Disease, this is an incredible number of members.
Although we’re spread throughout the world, many of our members get together, visit each other in the hospital, talk on the phone – i.e. offer real life support as well as online.
We’re able to share doctors, labs and other medical personnel who have helped along the way.
Many doctors are unfamiliar with Cushing’s and don’t figure they’ll ever see another patient, so they don’t see it when it’s sitting right in front of them. They assume that we’re all fat, lazy, depressed… and don’t test for what it really is.
Thanks to the online community we have forged on the message boards, Facebook, Twitter, chatrooms and more, we’re able to get the best care for ourselves, something that I never had for myself when I was trying to get diagnosed in the pre-Internet days.
In 1983 I diagnosed myself with Cushing’s using library medical texts that I could barely understand. It took over 4 years to convince a doctor to even consider running any tests for Cushing’s.
Thank goodness the Internet has changed all that and “Cushies” today can get much of the help and support that they need right from their computers!
Thanks, Mary!
Cushing’s Help is an impressive site. I am aware of these patient-led communities, large & small, and am now looking for ones that include clinicians or have a connection with medical practices, whether formal or informal. I’m looking for examples of health professionals who are tapping in to the knowledge that is being shared online and offering their own expertise, especially if it’s connected to a clinical practice. Is that the case with Cushing’s Help?
Please let me know if I’m not explaining it well. This is why I wrote a blog post and am trying to lure people off Twitter to talk about it :)
The http://www.cushings-help.com website, and all of the social media offshoots, do NOT allow or want physician or medical practice participation. The beauty of peer-to-peer health support groups is that we are free to voice our opinions, concerns, suggestions, problems, support, links to research, etc. without the worry of a physician moderating our communications. That said, the Cushie support network invites physicians to give podcast interviews and online chat sessions, which are preserved as a helpful for all members both present and future.
With such a complicated disease, I would never participate in a physician-sponsored online support group. To do so would greatly impede communication by those intimidated to ask simple questions or those who need information about helpful doctors who might be other than the doctor/s involved with such a group.
If I need to communicate with my doctor or doctors, I email them (if they allow) or make a face appointment. My support is about 80% patient-to-patient and 20% physician-patient. I get immediate and numerous replies to a question in a peer-to-peer group. I doubt doctors (and I come from a family of surgeons) have the time to communicate online like that.
Thanks, Kate, you are adding to my (and everyone who reads this blog’s) understanding of what is really going on with peer-to-peer healthcare. We need this mix of patient and clinician insights – much appreciated.
I don’t know that it matches the scale of Weight Watchers or AA, but La Leche League comes to mind. That’s a very old example of peer-to-peer health care that still has resonance and a huge following today. Considering how little lactation education/training doctors have (even pediatricians and OBs get only a few hours of breastfeeding education and no required clinical rotations), fellow breastfeeding moms are often the main source of information about managing lactation difficulties, knowing risks of substances/meds, addressing general postpartum and infant health concerns, infant nutrition beyond the period of exclusive breastfeeding, etc. I went to LLL meetings after both kids and both learned new info and shared what I knew as a clinician and mother.
Thanks, Amy! I love that example. It’s funny how maternity care springs to mind for me when I look for examples of successful group care and integration of lay experts and clinicians.
I still think about the awesome presentation done by your colleague Sharon Schindler Rising at Mayo Transform 2010:
http://www.youtube.com/watch?v=cdCy4L5HaXU
“Imagine care that has moved out of exam rooms and into groups… One woman’s question was another woman’s question…same thing over and over…I couldn’t run on time…there has to be a better way to do this…”
So we know group care can be successful offline – how about online? Are there examples of online group care practices, a hybrid of a patient-to-patient/peer-to-peer forum and a provider-patient relationship? That’s what I’m really looking for.
Susannah, Starting with a firmly 2.0 compliant site which allows for comments, tweeting and “Liking” or sharing of content — patients are also offered the chance to book appts online via ZocDoc and communicate through a secure communications portal. Many patients have also reached out via Facebook, YouTube and Twitter … but there is a lot more that we can do… once the privacy laws in the US are amended to enable these forms of communication in a meaningful way.
Thanks, Howard!
This just what I was hoping/fearing to read – you use all the latest cool tools to attract patients to your practice, engage them in educating themselves about the care they might receive, help them transact the basic business of appointment-making etc. – but you don’t yet reach the nirvana stage of introducing patients to each other and learning from them as a group, am I right?
Again, no critique here – what you’re doing is extraordinary and I admire it (heck, when I have a twinge in my knee when I’m running, I think “how can I get myself to NY so I can be treated by @hjluks?”) I’m just wondering if anyone has closed the gap between the many (many) patients and caregivers who are online and eager to engage and the handful (or more) clinicians who are ready for them.
I’m grateful to everyone who has responded to the questions I pose in this post – thanks so much!
I want to respond to a few questions and comments I’ve received on Twitter, via email, and on the phone (and are therefore not recorded here).
One person said that I may be “hunting for unicorns” when it comes to finding examples of the successful use of social networking in a clinical setting. That’s what prompted this tweet:
Is @macobgyn a unicorn? Are there other clinical practices using social tools to connect w/patients?
Jeff Livingston, aka @macobgyn, tweeted back a list of other clinicians who engage with social tools. What I don’t know (yet) is whether they use Facebook, YouTube, Twitter, etc. to the same degree that Jeff & his colleagues do – to not only network with other clinicians or disseminate information, but to connect patients with each other in a community.
Chris Schroeder tweeted back two short comments that pack a punch:
@cmschroed: are there many? Any??
@SusannahFox: Exactly my question. I’ve seen more silos than networks. About to expand on this theme in a comment.
@cmschroed: all silos. All hip one offs that miss the essence and complexities in health. So far… :)
Susan Lackey of the Healthcare Performance Management Institute both emailed and tweeted a link to their report, “Healthcare in the Era of Twitter,” which is available as a PDF:
http://www.wellnet.com/sites/default/files/files/HPM%20in%20the%20Era%20of%20Twitter.pdf
It’s a very good paper and cites strong, if familiar, examples of how electronic health records can be used to improve clinical practice; how online patient forums can educate people who have the same condition; how expert health blogs can educate its readers. But again, these are silos. Please read it and correct me if I’m wrong about that.
Another suggestion sent by Natalie Hodge is personalmedicine.com which she described on Twitter: “our docs use cloud, mobile, ecommerce, 4g as core tech to create practice, then content and community with #hcsm to add value.”
Again, I checked it out but don’t see what I’m looking for – a clinical practice that uses social tools to listen to patients, to disseminate information, and to connect patients/families with each other around a common condition (such as diabetes).
To sum up:
I went looking for examples of a virtual village that includes clinicians. I found many villages, but not connected with clinicians (ACOR.org, PatientsLikeMe.com, Inspire.com, hundreds of smaller patient communities). I found many clinicians who are using blogs, YouTube, Twitter to connect with patients and other health professionals, but not around a clinical practice per se.
Switching gears, I called Ted Eytan, aka @tedeytan. As he said: Don’t fixate on social network sites. Don’t fixate on practices creating a village. Recognize that a village exists – a patient’s family and friends – and when a doctor sends an email to a patient, it is being sent to their village. A patient will read it, or a family member will read it to them, and the email will serve as a bonding moment between the clinician and the patient, the family member, and everyone else connected to that person’s care. Ted argues that email is changing the culture of medicine more profoundly than are social networking sites — and email should count as a social tool.
Ted went on to say that in the future he hopes to be able to connect a patient with information about other people being cared for by a certain clinician, ie, Where do I stand in my diabetes management, compared to other patients in this practice? Am I top of the class for getting mammographies on time, or do I need to improve, compared to other people treated by my doctor? But that’s still far in the future, he said.
Instead of focusing on a certain tool, focus on the cultural change that is taking place.
Thanks so much for getting this far in my epic comment. Please continue to send examples and I’ll continue to try to be clear about what I’m hoping to find!
Like a patient portal where you can securely review your info/talk to your doc/email/whatever, that might also have a patient forum where those with like issues can discuss? (side note, the physicians could then moderate/review and mine for issues that aren’t brought up directly/thought to be significant by patients)
That last sentence above is exactly why, as a patient who has endured 5 surgeries and radiation related to a brain tumor, I would never never never participate in a physician-involved support group. Who wants to be moderated, mined and corrected?
The doctor who told you email is a social tool is spot on. In our Cushing’s support online network, those emails are shared verbatim with other patients. They absolutely DO become part of a social network sytem. So do info from phone calls and face appointments with physicians. I think the good doctor makes a point worth considering.
Kate,
> I would never never never participate in a physician-involved support
> group. Who wants to be moderated, mined and corrected?
Ouch. I hear you, and yet, what a pity that things have in some circles gotten to the point where physicians are feared. (And again, I hear you.)
To me this points to the need for patient communities to be run for and by patients. In that culture, physicians wouldn’t be able to moderate and correct, at least not for long.
When I think about great empowering / collaborative docs like our social media friends Howard Luks, Jen Shine Dyer, Danny Sands, Ted Eytan, Roni Zeiger, Wendy Sue Swanson, @Doctor_V, Kent Bottles, and many more, including the dozen on our editorial board, I can’t imagine them being a problem in a patient-centered community. They clearly do see our needs and opinions as being the center of care.
Dave, its not so much fearing doctors (although in the Cushing’s community, there is a substantial amount of fear of retaliation from a number of doctors, some of whom do act a bit like stalkers) as being sick and tired of dealing with them. Having to suck up constantly to try to get them to do their jobs, having every doctor’s appointment be a “beg for your life” event, having to constantly try to strategize how to get them to figure out that they have not a single clue about their job without insulting them, how to deal with so called “professionals” whose lack of follow up, rudeness, etc. would result in them not being able to hold a job washing cars. The very last thing patients who have had their lives upended by these gods-in their-own-minds want is to have the one refuge they have, patient groups, invaded by these overbearing jerks. Its not fear, its dislike and disdain. Many docs seem to need an unending source of narcissistic supply, they ain’t getting it from a patient group and the reaction when that doesn’t happen ain’t gonna be pretty. They want to dispense “pearls of wisdom” and will not accept being at the same level as patients or, shudder, in the role of the learner. What will be interesting as the leveling of information continues to happen is how doctors are going to deal with understanding that a good portion of their patients really, really don’t like them and don’t think that well of them.
I think there’s a hierarchy of needs in action here. You mentioned diabetes as an example where healthcare folks might use social media to connect to patients and connect patients to one another. Now I look at things from a type 1 diabetes perspective and with that we are swamped with numbers. Many aspects of our care revolves around them: A1c; insulin to carb ratios; cholesterol; blood pressure; and too many etc.
A1c is a useful measure for how we’re doing over a longer term, and someone already mentioned TuAnalyze. But diabetes is lived day to day. If you get the individual days right, the months and years take care of themselves. This challenge is compounded because it’s impossible to get the data from my insulin pump and combine it with the data from my blood glucose meter and that from my continuous glucose monitor. Each of these data sets are provided to me in their own walled garden, actually more like the weed patch that represents the software provided with most devices.
Until I can collect my diabetes data, with my asthma data, BP, weight, etc and look at a health dashboard it’s really hard to make any sense of all of those darn numbers.
If we, who are living with these devices, can’t do it what chance does the healthcare team have. And if they can’t then it then it’s harder to share best practices and outcomes with others.
When I was working for the Centering Healthcare Institute (Sharon Rising’s organization) I often thought about the power of connecting the IRL groups by some kind of communal personal health record – where the people participating in the group could track health goals, share information, access health professionals, or even issue health challenges between the monthly visits. I’d still love to see that idea see the light of day. Maybe eventually…!
What about what HealthTap is doing? I’m still not sure I understand their model, but I know it engages clinicians (physicians, specifically. Maybe I’ll pay more attention when they engage midwives, too!) I don’t know about the peer-to-peer part, though.
Hi Suzannah, Our physician network uses our mobile platform for medical practice. Our docs use our content platforms to…
1. Securely message patients for matters which are private and specific to one’s healthcare condition.
2. Specifically email secure content to specific groups of patients within the EMR platform. ( Asthmatics will get tips on seasonal asthma prevention and med reminders, for example. Anyone with a BMI over x by report will get nutrition reminders)
3. We use Twitter to Broadcast wellness and nutrition content systematically to the world, in in hopes of INFLUENCING behavior with our general content.
4. We use Facebook, Mobile and other content platforms to CREATE useful health content and community which is generated out of our experiences at the bedside.
5. Emerging aggregators and Q and A sites like @OrganizedWisdom and @healthtap synergistically AMPLIFY our content to the world.
6. We excitedly look towards API development off our core EMR platform in which we can further reduce costs and increase value of preventive services to patients. ie, our scales we use interface to our data and we can remotely follow weight, we can prescribe aps for health specifically for patient needs, and the data from the consumer aps has secure interconnection with EMR for our interpretation.
Dr Nuessle, Overland Park, KS
https://personalmedicine.com/pmi/index.php?option=com_wrapper&view=wrapper&Itemid=123
Dr Reyes in Richardson, TX
https://personalmedicine.com/pmi/index.php?option=com_wrapper&view=wrapper&Itemid=123
Dr Bradley in Pennsylvania and Missouri (telepsych, virtual house calls for mental health)
https://personalmedicine.com/pmi/index.php?option=com_wrapper&view=wrapper&Itemid=123
Thanks, Natalie
It seems you are investing a great amount of time and effort in informal education. How do you measure outcomes and determine whether it cuts healthcare costs? No healthcare organization can be 100% altruistic. What is your cost for engaging social networking in your practice and what return do you get for that investment? How can you really be sure patient behavior is changing as the result of your social outreach? In the end, is it not really more effective at marketing the practice than changing patient behavior?
Oh, and PS, we are not unicorns either. We are a network of seasoned and board certified MD physicians. Care must be taken to distinguish how you are using each network and for which purpose. EMR is “patient specific” this is the ” back end” and is secure. #hcsm is general content, encourages positive health behaviors and is the ” front end”, so to speak.
Thanks, Natalie!
I am so grateful that you took the time to write such an extensive comment — I understand the goals of the physician network much, much better because of it.
Please know that my “unicorns” tweet was not meant to disrespect anyone, but to sum up in a single word the perception that these practices are rare and even unique. We are seeing the limitation of Twitter and the opportunity of blogging, in a nutshell.
Hi Natalie/all,
Don’t blame Susannah for the Unicorn comment, blame me :), she was just using journalistic integrity in asking for my permission to attribute at the same time you were commenting (permission granted!).
Natalie, I am a huge fan of your work, please know that the context was that of “systems” that use social media integrated into care delivery. There are a lot of physicians who use the tools that our patients do, twitter, facebook, etc. I would argue that maybe the Natalie/Ted model currently doesn’t scale well, and it is not integrated into care delivery processes.
Susannah and I (okay, maybe just me, but maybe Susannah too) are looking for systems and tools that on a population scale reduce gaps between patients and providers using this medium and leverage it within the physician workflow.
I’ll be posting on my blog about a technology demo in September that we’re having at the Garfield Center in Oakland to look at possible next generation tools that do this. If you know of any cool API-bridging/EHR stuff, send my way.
And, my use of Unicorn was meant in the spirit of “a thing of beauty, that we should all have.”
Best wishes,
Ted
With the Cushing’s site, it is not helpful to have doctors participate. One of the most valuable contributions is a frank review of what doctors do well in diagnosing/treating and which doctors do poorly. And frankly, the patient sourced information has been more reliable and quite different than what the local endocrinologists think. When you are dealing with a rare disease, often patients have more insight than doctors who rarely handle this kind of patients. In addition, the specialists who handle the very specific disease can have idiosyncratic opinions and not be very open to learning from others. Patient sharing can ‘level the field’ and provide an important balance, without the cost and inconvenience of traveling.
As a patient, I think its a little creepy/stalker like to have doctors participating in patient groups. I think that patients would be less likely to be frank and that valuable information would be lost.
What would be far more optimal would be for there to be physician boards, with closed participation, where doctors could bounce questions off of other doctors. I know that these sort of boards have worked in other professions, where there are also confidentiality requirements. It is surprising to me that in fact there isn’t much more of this and that this is more of patient led movement.
As an addendum – there are other Cushing’s sites sponsored by organizations tied to one doctor or another. They are not trusted as much because they are viewed as “advertising” for that doctor or doctors, and therefore biased.
While Cushings-Help isn’t reviewed by a doctor/s, we do have some doctors on which we rely for helpful information. Dr. Theodore Friedman is one. We’ve had multiple chat and blogtalkradio question/answer sessions with him, and he also freely shares any pertinent information with our support group.
As Rachelle said, we are shy of having doctors involved because too many of them have treated us poorly or given wrong information. You have no idea about the wealth of knowledge among our group.
Having said that, does anyone ever give poor information. Yes. Does it matter? Yes. Others will chime in, most of the time very nicely, and give better information. Do we try to be doctors? Sometimes the members ask others to be by asking for help in a way that only a doctor can give, and we strongly emphasize to that person that s/he needs to see a doctor about that. We can suggest tests and discuss results of those, however.
Susannah, I cannot emphasize enough how this site saves lives. I saw a world renowned Cushing’s expert who supposedly understood the disease. This doctor not only told me that I wasn’t sick, but I also received the diagnosis of depression and needing bariatric surgery. Bariatric surgery is harshly criticized for Cushing’s patients. (I have the research to back that.)
There are several doctors we know who understand Cushing’s worldwide, not just in the U.S. Thankfully, the list is growing longer. I won’t go into the numerous ways the knowledge of these gets disseminated to a huge volume of patients, but it does. The point I want to make is that we don’t want them on our support boards, but we do want them to be there if we have questions or need to see them.
You won’t find a site about any disease with more factual information than the Cushings-Help sites. Research is posted daily. There are multiple blogs reaching out to people who need to know they aren’t just fat. It is a magnificent, awesome, wonderful, knowledgeable, and caring place.
I know you who know me get tired of hearing this, but without this site I would be dead. Between my weight, my uncontrollable hypertension, and the horrible effects of Cushing’s on the cardiovascular system, I was dying. Because of the efforts of some really good doctors I found with the help of this place, and because of the support of the marvelous people on the site, I have lost almost 80 pounds, gained my life back, can walk and go places and do things I haven’t done in 20 years. I had Cushing’s for almost 30 years, according to my symptoms and pictures from my life. Sadly, no one figured it out although I begged for help all that time from my doctors. I am forever indebted to this site and this support group. They figured out what I had before any doctor did. (Not to tout my blog, but you can see with a recent post the pictures from my life that show the progression of my disease and then the effects of my “cure”.)
Robin, I’ll never get tired of hearing your story – I’m always learning from you & your colleagues.
Dave, for some reason I can’t reply to you above, but let me just say this… we’ve know a lot of caring doctors who seem to fit the description you mentioned in response to Kate, above. Bottom line: They still don’t understand the disease.
And let me add that Dr. F, mentioned above and Dr. L, another excellent Cushing’s doctor, have collaborated, shared, emailed, and talked via phone with their patients for many, many years. This is not new to them.
I have to agree with Robin about not wanting doctors directly participating in our Cushing’s Help forums. I am grateful that they make information available to us through blogtalk radio interviews, online documents, emails, etc. They know we share information, encourage us to do so, and they know we discuss and recommend doctors. That’s how most of us find the doctors that can, and do, save our lives.
But the way we interact with each other in our online community is outside the doctor/patient relationship. We’re family there. Just as family can be extremely informative and supportive, family communications can also be very messy. It isn’t always efficient, especially as new people join and have to adapt to our community culture. We have our own short hand, inside jokes, and a wide variety of networks among the community members. We are candid with each other. We vent, rant, laugh, cry, celebrate, problem solve, and learn together. We are a really big family. The bigger the family, the more complex and complicated they become.
No matter how much we love, admire, appreciate, honor those doctors who “get” us Cushies and truly care for each of us, we need them to remain outside the patient family. We need them to remain objective and uninfluenced by family interactions. We need our relationships to our doctors to be straightforward and uncomplicated. There are just so many reasons that physicians don’t treat members of their own family. If they joined our “family,” it would change our relationship with them and break the doctor/patient relationship.
For the same reasons, I don’t want my PCP reviewing or engaging in informal encounters between me and her other patients. I’d love to have my PCP as a member of my family or even as a best friend. But I NEED her to be my doctor.
All the doctors in my healthcare team have a personal policy of not reading patient blogs because they want to maintain a professional distance from patient’s personal lives—to not risk having their professional judgments influenced/compromised by “monitoring” or otherwise engaging patients outside of the formal doctor/patient relationships. I completely agree. My life depends on their professional judgement.
What a great series of comments! I am not sure where to start at this late stage, so I’ll just make some bulleted comments in no particular order:
Susannah, your initial question is spot on. It is hard at this stage to find any evidence of outcomes. Perhaps because outcomes take a long time to surface. Or perhaps it’s simply because the outcomes aren’t being published (or not published where I’m looking, at least). Or maybe because we are defining outcomes in the wrong way? Yet I don’t give up hope – or the belief – that it is happening.
In my life as a public health worker bee, I am actively working on introducing social media to a wide variety of health programs. Along the way I always seek out case studies (I should be going into another round of this in the coming month…). As I collect them I will do my best to broadcast them within the #hcsm community. I am also trying to come up with a way to be more coordinated and strategic about collecting, tagging, and sharing these examples. Perhaps its a wiki (such as We Are Media or The SDM Wiki or something else entirely). I am open to ideas, and of course to help. I may be able to provide some of the initial structure, but it will only be as good as the information provided by the larger world.
As a doctoral student, I am focusing on the organizational culture change that you reference (heaven help me in the coming years). The Ted/Susannah comment made above, repeated here, is what I think about all the time: “Instead of focusing on a certain tool, focus on the cultural change that is taking place.” The way I generally express this is “the software is easy to change; the humanware is a bit tricker.” As I continue along this path, I fully anticipate turning to this site and a host of others that constantly provide me with fodder for thought and discussion.
Much of what I see out there as “patient centered care” is really provider centered perspectives on patient centered care. We’ve got a long way to go, both in cultural change and in policy to incentivize, promote, and support cultural change. There is no one solution to this – it will take a variety of smaller steps to move us along.
I am reminded of a comment I caught via twitter from Geoff Livingston over a year ago: “The moment of truth for an organizational social media effort is when it moves from content publishing to community building.” This seems so intuitive to me, but I recognize it is hard to achieve.
Thanks, Jodi!
The quote that is sticking with me right now is this one:
“Social media doesn’t transform your culture, it exposes it.”
Credit:
http://twitter.com/bhc3/status/82989866736041984
It was said at a business/marketing conference, but I think it applies broadly, including to health care.
Geek note: Susannah, the Twitter URL you posted didn’t come through, because Twitter has taken to using the much-damned “#!” convention in its URLs. I don’t know why it’s much-damned, but a few months ago I saw some tweets (@judsondunn, perhaps?) linking to articles about how it’s a wrong syntax, not proper, but which happens to work as a link but which (I think) screws up all kinds of URL-parsing things. Including, for instance, when you paste it into a blog comment.
I’ve probably got the details wrong. Anyway, as pasted in, it was unclickable. So I edited out the #! after “twitter.com/”, and it works.
I’ve been thinking about this statement. It sounds good at first reading. But I don’t believe it is reliable. If the social culture can be “exposed,” it can be evaluated. If culture can be evaluated, it can be deliberately changed through changes in policies or by adding educational opportunities.
Social media can also allow culture creation by bringing together people with like interests. As people use social media to interact around special interests, the group culture evolves organically. This evolution can also be managed by identifying and meeting group needs as well as updating policies and education that set guidelines for participant behavior and expectations.
The ways we use and manage social media can transform a culture.
Sounds like you are looking for a social media purist–a doctor or group using social media to connect and engage. What I mean is connecting because it expands the doctor patient relationship beyond the four wall of the office making the doctors life easier and the care they provide better. Many practices and groups focus on the marketing aspects if social media and forget the original purpose if social media —-be social. Strip away everything and what do you have? Two people talking. That’s what makes social media special. Marketing is secondary and if you keep you motivation pure will happen naturally
Nail on head – thanks, Jeff!
(and for anyone who doesn’t know him, Jeff tweets as @macobgyn and is one of the docs behind MacArthur OB/GYN, mentioned in the original post)
I agree with Susannah, Jeff, and was inspired by your comment to expand on it a little in a blog post this morning – I think we need to keep the experience you describe in mind and build toward that, thanks for chiming in.
You may want to contact Kerri (http://kerriontheprairies.wordpress.com/) regarding asthma communities (I believe she either is part of one or is trying to organize one, based on comments she’s made in relation to our #dsma twitter chats). Also check out the various communities available on Alliance Health.
The Cushing’s community is not the only one that is skeptical of doctors sponsoring or hosting a chronic-disease community: we have similar concerns in many of the diabetes communities in which I participate.
Some of the comments surrounding the upcoming demise of Google Health (see http://healthworkscollective.com/shahidshah/22963/now-google-health-dead-what-did-we-learn-about-phrs-engagement-and-messaging-what-m) suggest that patients who wish their medical teams to interact with them online are not interested in community interaction, but rather in a practice-hosted (or insurance-carrier-hosted) system on which they can view patient-specific medical advice.
Thanks! That’s a great suggestion. I’m on it.
Hi Susannah,
I want to introduce you to 2 initiatives we have been working on for more than a year at Hospital Sant Joan de Déu, a leading Spanish children’s hospital (Barcelona), one of the top 5 in Europe, and a reference point in Health 2.0.
Initiative #1:
Guia Metabolica: http://www.guiametabolica.org
It is a healthcare community for patients and families with inborn errors of metabolism (IEM), which comprise a large class of genetic diseases involving disorders of metabolism.
The community has 3 focuses: a) providing accurate and reliable healthcare information about 57 of this IEM (there is very little quality information in Spanish); b) online consultation between caregivers and patients (from Spain and from Latino America); and c) a set of helpful resources made in a crowdsourcing way (Google Maps with useful resources, healthcare advice, more than 400 recipes especially designed for their healthcare condition, etc.).
Initiative #2:
Our institutional Facebook (http://www.facebook.com/HSJDBCN), which we use to promote healthy habits among our patients and families. Often, they ask medical questions that our physicians answer. The idea is not to be a second opinion site, but a place where patients and caregivers can interact with each other around the topic of promoting and pushing for changes in life styles.
You can check all our digital presence in SM here (only in Spanish, sorry): http://www.hsjdbcn.org/portal/es/web/xarxes_socials
And our web portals (some of them are and social communities for certain disease conditions): http://www.hsjdbcn.org/portal/es/web/portals_tematics
We are also the first and only hospital in Europe, and among the very few around the world, who have established a Social Media policy (http://socialmediagovernance.com/policies.php?f=4) with a two-fold approach: 1) for our professionals and patients when they talk about the institution, and 2) for our professionals when they talk on behalf of the institution.
Let me know if you are interested in receiving more information.
Best,
Jorge
Jorge,
Wow. Yet another reason to regret not studying Spanish! I’ll dive into the links you shared to see what I can learn.
Have you heard about the Collaborative Chronic Care Network, based in Cincinnati, Ohio?
http://www.c3nproject.org/
It’s an example of a program that incorporates input from clinicians, patients, and family members to improve care for Crohn’s disease. The “network” comes from the fact that they are sharing clinical practices and insights across multiple institutions as well as bridging the gap between “what professionals know” and “what patients and their loved ones know.”
I am not sure I can use it in my article yet since it’s just getting started, but it’s yet another “dream” example of what participatory medicine is aiming for.
Thanks Susannah for your reply!
It is never too late to learn Spanish!
The page you sent me is very interesting. There are some ideas that will be useful for our case. Thanks so much for sharing!
Hopefully you will consider our initiative http://www.guiametabolica.org for your article!
Best,
Jorge
Tiffany Wilburn I read this article and a lot of the comments. Other more common diseases it may be okay to have a doctor connected but when you are talking about Cushings where we have had to educate our doctors and the medical community,well, I think it would be a mistake. I don’t know how to put it softly but I don’t know of one dr who knows everything about this disease and frankly they get it wrong a lot. I think it would frustrate epatients more. We also rely on being able to talk openly and freely amongst our peers.
Very cool Ted. Feel free to correct my typo. Looks like two of my “of” came out “if”
That’s what I get for typing on an iPhone while on vacation:)
Susannah—-
Healthtap is in the process of creating the doctor patient network connection extension that you are looking for. It is pretty awesome. It is easy to use so I can see slot of docs who fear soc med starting here. Patients will like the immediate online access to validated info. I’m a believer and I’m usually a skeptic of most new tech
Yes! I am watching Healthtap with hopeful eyes, but again, I’m looking for examples of clinical use of social media that has a bit more of a track record (like your own).
The spirit of what I’m looking for is pretty simple, captured by the moment when Danny Sands, MD, wrote “ACOR.org” on a prescription pad and handed it to Dave deBronkart. A clinician encouraging a patient to reach out to fellow patients, to learn from expert peers, yet also setting in motion all the machinery of the health care system (referrals, tests, treatment plans, etc.)
I’m amazed by the range of comments we’re getting on this thread, from both patients and health professionals. This is the conversation that needs to happen in health care.
Expert patients telling about how they teach other other and share clinical insights (and yet rely on clinicians for actual medical care).
Clinicians telling about how they use social media to open up communications channels or just let their patients know that there are resources they can tap into.
Not all patients are as empowered as the Cushies we’re hearing from. Is there an opportunity for clinicians to tell patients about online resources? To acknowledge the underground railroad and bring it up into the light? Is there an opportunity for clinicians to learn from patients and caregivers, based on the networked knowledge that exists online?
Those are the questions I hope to explore in this article I’m writing.
For what it’s worth, I had a physical last week, and for the first time ever my (new) doctor recommended an online community and website to me (livestrong.com). It was more wellness/fitness related, but still, I was pleased. She didn’t know I was interested in social media and health prior to the suggestion. She does now.
“Not all patients are as empowered as the Cushies we’re hearing from. Is there an opportunity for clinicians to tell patients about online resources? To acknowledge the underground railroad and bring it up into the light? Is there an opportunity for clinicians to learn from patients and caregivers, based on the networked knowledge that exists online?”
I have been to conferences specifically FOR Cushing’s patients where the doctors have told the patients to stay offline, that there is only misinformation to be found there.
With that kind of attitude, I doubt that they will be sharing any kind of online resources.
For me, in my pre-Internet days, a simple phone list would have worked. The doctor tells me that so-and-so has Cushing’s (with his/her permission, of course) and I call that patient. Instant, easy, social media and the doctor was involved.
Relating to what Anne said a bit later… About 8-9 years ago we had a Cushie who had had successful pituitary surgery, loved her surgeon and medical team and posted about it. She got an infection post-op and mentioned that, too. The surgeon sued her.
It’s very hard to have a meaningful dialogue with anyone if you’re always afraid that they might sue you or put something in your file that will cause other, future, doctors to wonder about you.
All: if you haven’t watched it yet, here is e-Patient Dave’s TEDx talk which includes the moment when Danny prescribed ACOR.org:
http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html
I am a member of a few rare disorder boards. On one of them, we have quite a few doctors as members (including main researchers). A few years ago, I posted asking a question about a medicine I was going to start, and it being possibly contraindicated with said disease. A physician posted and completely insulted me for even considering this medication. Meanwhile all the “up to date” physicians and researchers are aware of the need for this medicine. He was just not up to date with the new guidelines, etc.. Even though he was clearly wrong, I am now very, very cautious in what I write. And, honestly very rarely do I see a doctor ever help anyone or offer any ideas. There are so many people writing on that forum who are in so much pain and absolutely desperate, and usually the physicians offer no help or ideas. I see no benefit.
Susannah, what we are finding in our Cushing’s groups is that we are more educated about Cushing’s than most endocrinologists. We understand that because we know they have to treat a lot of things, not just Cushing’s. However, we wish THEY understood that. We have a myriad of information/research (and I mean current research from all over the world), resources and research shared by our few good doctors with us, and stories of successes with the paths that were taken to get there.
We would love to be treated as intelligent human beings. No matter the education we have, we all can learn, especially if it means our life or the life of a loved one.
I will end with a quote from one of our members who fought to find help for her daughter:
“Until this all began I was a hair stylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.”
From the comments here and my own experiences, a couple of things are popping up in my head. First, that patients are more than willing to share their data with other patients — whether it be quantitative (e.g., bloodwork results) or qualitative (bad experience with a drug or a food, or a combination of items). This information could be useful to researchers if it were made available in a mineable, rather than anecdotal, format (see TuAnalyze, from the TuDiabetes community). The issues are (1) confirming the validity of the data (do doctors and researchers trust patients to post complete and accurate data?) and the biases inherent in the population, (2) assuring patients that the data will not be trackable from {researcher, provider, health insurance company, employer, etc.} back to the individual, (3) informing researchers and care providers about the presence of the data and encouraging them to use it, (4) informing ALL care providers about changes to protocols based on new research and information, and (5) making those changes financially accessible to patients.
Somewhere along the line, there will need to be neutral health-data brokers asking researchers what sort of data they need, or in what sort of format information on emerging trends (e.g., adverse interactions that don’t show up until someone has been on a combination of drugs for several years) needs to be collected, and setting up a secure method of collecting, depersonalizing, and providing that data to the researchers (also, announcing to the researchers that patient communities have found a trend or collected data that they want brought to researchers’ attention).
I agree with tmana that a neutral data/analytics layer is needed to serve as a bridge between the needs of the researchers and the data/knowledge/insights captured in patient communities. The research/analytics publishers will add research methodologies and analysis and subsequently make the results available to clinicians (as EBM).
In essence, we’re talking about patient-reported data that can be used in research. Combined with outcomes data captured from EHRs into patient registries, future medical research will benefit from the availability of so much more raw data that can be mined for research purposes than we currently have with the randomized clinical trial paradigm.
Take a look at what Outcome (www.outcome.com) is doing in developing the structure and standards for patient registries under a grant from AHRQ. Their Registries for Evaluating Patient Outcomes: A User’s Guide (2nd edition) is a great resource for learning more about patient registries.
Still, I haven’t answered Susannah’s question. Have I seen a site that combines physician and patient social media? No. And, at the present time, I don’t think either piece is ready for a direct connect–beyond one-to-one physician-to-patient communication or other tightly defined small groups of providers-to-patients. But, it will certainly be interesting to watch the evolution of how patient-reported information is incorporated into medical research.
“do doctors and researchers trust patients to post complete and accurate data?”
This is a huge issue in the doctor/patient relationship. How many patients really believe their doctor TRUSTS them? I know very few who believe they are trusted. It took time to develop a mutually trusting relationship with my PCP. Years. And only after I brought up the issue.
She had long known that most patients don’t fully trust most doctors, but hadn’t really thought about how much she trusts her patients. It didn’t happen overnight, but we learned to trust each other. And it changed how she relates to other patients as much as how I relate to other doctors.
I can honestly say that even before we resolved the trust issue, she was the best PCP I’d ever had. Learning to trust each other, however, transformed our “push me/pull you” relationship to one of true partnership that empowered both of us to be more effective.
After hearing my husband’s PCP blame him for not responding to prescribed treatment, I pushed for a referral to a specialist who adjusted the treatment to someting that was a bit more complicated but got the desired result. The PCP resented hubby’s success with the treatment change. He could no longer blame the patient. Hubby changed PCPs after that. He needs a doctor who trusts him.
Even if all doctors and researchers were willing to trust patient-supplied data, we speak different languages. Most patients don’t have medical or research training. That means patients and doctors/researchers often have different expectations about what needs to be reported,how to go about it, and what it means. Transmitting information in a reliable/trustworthy manner requires a shared vocabulary and shared expectations. Those take time and deliberate effort to produce. I suspect that having doctors/researchers just pop-in to an online community for data mining is likely to produce many errors and further undermine trust.
I understand your concerns, and I myself am learning the lesson that you can’t trust anyone. Ever.
However, in the spirit of Participatory Medicine, if we realize that some doctors stink at trust, humanity and decency, but so do some patients, because we’re all human beings, flawed in many ways….(pause for effect)
…then why would we not want to try and build a forum where patients and physicians could discuss knowledge with each other? It won’t work for everyone, but it could have some benefits for all.
“I understand your concerns, and I myself am learning the lesson that you can’t trust anyone. Ever.”
When participants can’t trust, or feel trusted, they are unlikely to share much knowledge or cooperate in other ways. Exactly how does Participatory Medicine work without mutual trust?
Maybe it’s a matter of semantics, I personally don’t care if the doctor “trusts” me, and I’m never going to “trust” them implicitly like I do my wife or my own feelings. I just need them to discuss things with me and consider my opinions, with good reasons given (in a polite manner) if they feel my opinions are incorrect.
In my continuing quest for evidence, I found what appears to be a nice review of group therapy interventions for diabetes management (offline, but goes to the point I’m hoping to make):
Psychosocial Therapies in Diabetes
http://care.diabetesjournals.org/content/24/7/1286.abstract
Also, from the Health IT Buzz blog at HHS:
New Mobile App Will Use Texting for Diabetes Management
http://www.healthit.gov/buzz-blog/beacon-community-program/mobile-app-texting-diabetes-management/
One of the suggested actions for a participant in this text4baby-like program is to connect with an online social forum!
If anyone has other suggestions for reading related to the benefits of group support (particularly for diabetes) please let me know.
Dr. Susannah,
Please consider the Pediatric Adolescent Gastroesophageal Reflux Association. Our web site at http://www.reflux.org was one of the first dot-orgs. It takes 1.2 million hits, has 300 info pages and 120,000 searchable postings. A team of trained volunteers hangs out there. Dr. Tom interviewed us in his original paper.
Dr. Tom Ferguson cited us in his white paper because we had impact on the disease. We discovered it is genetic, gathered family info and shopped around for researchers. Gastros thought the idea was stupid but we had the last laugh in JAMA July 2000. Reflux is nearly a household word now but was completely unknown when we started. We placed articles in media and worked with industry.
As far as social networks, we have our own on http://www.reflux.org and have a minimal presence on Facebook. We don’t participate in other forums because we can’t be assured that the info exchanged will continue to be available. Our web site has chats going back nearly 10 years and there is an amazing wealth of information in one place. We don’t want to spread it out onto Twitter and Facebook.
If we had time and money to pay the webmaster, we would use more of the cool interactive tools beyond postings and comments. Our NEWS ABOUT GERD and READING ROOM sections of our web site are languishing from lack of staff time – all of our staff are laid off. We still have phone, e-mail and web peer support but don’t know when we will be able to do some of the activities that other groups conduct. We were early adopters of trained peer-support but are running out of steam after 19 years.
Re: working with doctors. Sore subject. We tried. We really, really tried.
We spent a lot of time and energy in the early years courting doctors, going to medical conferences and trying to get into the sacred inner circle. We eventually gave up after chatting at a conference with other non-profit directors down at the deserted end (non-profit row) of the conference hall. Very few groups had any luck getting the gastros to care about or even acknowledge patient groups. We all had experiences where the big shots in the pediatric gastro community would turn their backs on us and refuse even to shake hands. After comparing notes for an hour we realized it was fruitless. This was about 10 years ago.
Just a few months ago, I found out that a good friend meets with the head of NASPGHAN regularly and asked for an introduction. My goal was just to make nice and see if we can develop a working relationship. My friend thought this was perfectly reasonable until he had to call me back and tell me that there wasn’t a prayer of this professional society accepting patient groups in my lifetime. So sad. I’m sure Dr. V. can confirm this attitude.
It isn’t just a lack of interest in patient groups – it is more of a contempt or animosity. We were careful after the first year not to let our discussions become a doctor-bashing event. And we never tried to act like doctors – we are educated parents and our volunteers are trained in detail how to never give medical advice. We used to think that we had brought the animosity on ourselves and really sweated this. It was such a relief to talk to the other patient group leaders and realize that they were nearly all treated as poorly as we were. (One group had a ‘champion’ in the inner circle and the director was married to a doctor. They also raised a lot of funds for research.)
Over the years, we encouraged gastros to write info for our newsletter, web site, give lectures anything. We had occasional success and even got a local gastro on our board for a while – mostly out of fear that our members were avoiding his facility because the bedside manner left a bit to be desired. We had a lot better luck with pediatricians, allergists, pulmonologists, etc.
We had to ban professionals from our web site. One kept giving medical advice and suggesting radical dosage increases via the internet. Our insurance company forbids this and we had to kick out the few professional members.
We have long offered to work with researchers who want access to our members but have had no takers other than the genetic researchers. Too bad. The patient response for giving blood to the geneticists was 39% and families that didn’t qualify practically demanded to be admitted.
We make our materials available with open printing rights. When we go to conferences, we ask the docs what literature they need us to produce. We now have all of our basic pieces in Spanish and lowered the reading levels. We are looking for grants to translate them into more languages. The pediatricians and nurses grab stacks of our literature, but we would need to attach $100 dollar bills to get rid of any quantity at the gastro meetings.
Wow. I hope this helps. It helps to get this off my chest.
I just scanned Dr. Tom’s paper again and saw names of many people who participated on Twitter today and this evening on this site.
Thank you all for all of your insights! And thanks to Susannah Fox for all of her hard work to tease out these big issues. Hope we didn’t ruin your vacation totally.
Beth,
Wow, right back at you.
Thank you so much for this history lesson and reminder that patient groups can have a significant impact on research and on their own care using simple tools like email and threaded web discussions. Stories like yours keep us grounded as we study the adoption of new technologies like social networking sites, mobile apps, etc.
Thank you also for the reminder to appreciate clinicians who are ready to listen to patients and caregivers. We can’t forget that this is a cultural change that started long ago and has many layers. Many stakeholders may not even be aware of the scope of the change that is taking place.
On a personal note, I crossed over at some point in the last few years – I’m now a full-fledged health geek who *prefers* to read journal articles on vacation. I shouldn’t be surprised, I suppose. I grew up watching my dad choose C++ books as his evening pleasure reading (after a full day’s work at IBM) and my mom choose to freelance-write articles (after a full day’s work as an editor of a local newspaper). There is literally nothing I would rather do than learn about the work of pioneers like you. My hope is to spread the lessons you’ve learned to as many people as possible. Hence, this article I’m writing (and the other writing projects I’m cooking up).
Thanks for the kind words after I did an emotional download on you at midnight last night. I adore medicine so much that even the novels I read tend to be medical/legal/ethical. I have always freelanced in my “spare” time and now do so for desperately needed income after being laid off from reflux.org. My tagline is Translating Medicalese, Legalese and Geekspeak since 1992 I live and breathe medicine. I once designed a Halloween costume that was medically inspired.
Another topic to tuck in the back of your busy brain: Why do foundations exclude “disease specific organizations” from applying for grants? Who do you turn to when you are sick? Duh.
Actually, the bigger picture as I see it is that disease specific organizations survive for one reason . . . the founder is a woman who has rich friends and doesn’t need a paycheck. All of the rest struggle for years and generally collapse. If it weren’t for an amazing web site that let’s our members run a lot of the show, we would have folded years ago. I give thanks every day for software programmers – they have done more for e-patients than anybody.
A friend tells me that the European Union has funds for the groups that produce the best materials on their disease and offer the best patient support. They see the value and know that an organization that supports tens of thousands of members can’t survived without cash. And the IRS forbids getting a high percentage of donations from industry/large donors. We can’t accept any large donations this year because we went over our target last year. I understand the reason for the rule, but hate the fact that we are in survival mode this year because we did too well last year.
The rules and forms are extremely complicated and require paid staff plus legal advice and a good (read expensive) CPA who specializes in non-profits. This requires cash.
Enough rambling, but it is nice to know that somebody is listening and cares about the future of e-patients.
Beth – wearing a bunch of hats (most with slashes)
Mom of kids with GERD, POTS and DVT/PE
Founder/Director of PAGER and reflux.org
Author of The Reflux Book
Owner/Freelance writer Clarity Writing and Editing
Past/Present Board member of other non-profits
My thoughts/opinions/whining here represents me, not any of the hats above.
Hi Beth – got any examples of the EU patient groups you mentioned? We’ve been looking to prove that these supposedly rare birds exist, and you’re saying there are a bunch and they have government support!
Can’t see why any patient support group would tweet. Tweets evaporate into the ether in a matter of hours. I know that is theoretically possible to find them, but I can’t figure out how. (Lessons or links are appreciated. Send to gergroup@aol.com)
Try some of these: http://www.readwriteweb.com/archives/10_ways_to_archive_your_tweets.php
Beth, Patient-group tweeting can be a method of public conversation — consider the #hcsm (healthcare communications and social media) and #dsma (diabetes social media advocacy) Twitter chats. These chats are a way for the participants to share feelings, information, and suggestions on a number of topics. The chats are moderated and the results may be archived (check diabetessocmed.com for archived #dsma chats).
We post questions on our discussion board and everybody chimes in. They can do so that moment or years later. We have an alert so that staff members see a copy of ever new posting – no matter how old the thread. We tackle all sorts of topics. The only real schedule is that we often post questions about picky eaters right before Thanksgiving. Anybody can post a question, not just staff.
There is room, and need, for both types of conversations: the “everyone chime in at once as if we were all in a big meeting room” gets a different sort of response as the “looking for solutions and this comes close to the correct question”. Perhaps what we need to do is to archive tweetchats by question/topic into separate archives with room for forum responses afterwards. (Or maybe not.)
Some points I’d like to make from reading the newer comments, and I hope Mary O’Connor will chime in here:
Although Facebook posts and Twitter tweets can fade off into the netherlands never to be regained, there is a lot of benefit from being able to quickly reach someone and get ideas/help/share information. I emailed and shared with Susannah an example of this the other day. It was vital for us to be able to do that. On a message board/support board, that CAN happen, but it doesn’t always happen and rarely quickly enough. Somehow, between Twitter, Facebook, the support boards, blogtalkradio and other venues we manage to stay cohesive. That’s a lot of groups and a lot of people.
Mary O’Connor has been able to single-handedly been able to build a huge “empire” of valuable information and support groups for Cushing’s. She is not rich. Not even close. I really hope she will chime in because there is no way I’m going to remember them all. For many, many years she sacrificed her own money to do this. She still does, but she also gets sporadic donations to help. Regardless of donations, she keeps things going in remarkable ways. We can always count on her to post the latest research, and how she keeps up with it all is beyond me. We all can post research, also, but she does the majority of it.
We have been begging for years for someone to use the treasure trove of data our groups contain. I know our information has been instrumental in a push for research about familial Cushing’s (as opposed to the MEN genetics)among other things. We can tell you as a group constant trends, reliable symptoms of high cortisol, the most likely times to test, etc. The problem with this, though, is how do you provide information for data and still protect the privacy of the group?
I love this discussion. My worst fear which so far has been pretty ongoing, is that we’ll talk ourselves to death and nothing is really going to happen to help me, the patient.
Robin,
I admire Mary and her group but you sort of proved the point I was making – if she put her own money in to the group, by definition she didn’t need to be drawing a paycheck. I not only can’t put my own money into my organization, we had years when we could barely buy shoes for the kids at K-Mart. I am willing to put in 60 hours a week helping our members but I need to be paid for anything over 10. And when I’m not paid, I have to get a part-time job and the group doesn’t get much attention. My normal paycheck is only $15k per year but that is SO vital to my family. My hubby makes great money but our health bills are quite high – who knew the co-pay for an 18 minute air ambulance would be $6,000? We have stacks and stacks of medical bills on our dining room table.
We truly lucked out for a while because the genetic researchers that we found to study out families got great funding and were able to hire us to do the additional recruitment. And we had some great partnerships with pharmaceutical companies but they don’t fund any of our activities unless they have an active drug that is approved for children. As the drugs age out and move to generic, we get cut off. We tend to put most of the money into programs and keep salaries very low, but they are still vital and we lost staff permanently during every recession. They have to feed their families and they go get normal jobs with decent paychecks as soon as their kids are healthy enough to allow this.
Excuse me, Beth – I have no idea who you are and you don’t know who I am or what my financial situation is.
I most certainly DO need a paycheck and I work. I would work more if my illnesses permitted.
In any event, I am by no means rich. Not even close.
I do manage to run my websites on a shoestring by very careful planning.
I would appreciate it if people didn’t make public assumptions about my financial affairs.
Mary,
My apologies. You were cited to me as an example. It was part of a discussion about how infrequently disease groups survive when the person starting it can’t put money into it.
. . .Actually, the bigger picture as I see it is that disease specific organizations survive for one reason . . . the founder is a woman who has rich friends and doesn’t need a paycheck. All of the rest struggle for years and generally collapse. If it weren’t for an amazing web site that let’s our members run a lot of the show, we would have folded years ago. I give thanks every day for software programmers – they have done more for e-patients than anybody. A friend tells me that the European Union has funds for the groups that produce the best materials on their disease and offer the best patient support. They see the value and know that an organization that supports tens of thousands of members can’t survived without cash. (I put in a message to my friend with connections at EU and will post if I get a response.)
I’m sure your group is wonderful and I may get a chance to discover that for myself as my granddaughter is waiting for a Cushings work-up.
Keeping a group like yours going is admirable regardless of where the money comes from. Rich or poor I admire you. I would like to communicate with you off the boards. beth@claritywritingandediting.com
Great topic, and really great comment string–thanks everyone. Susannah asked me via Twitter whether the online communities at my employer, Inspire, include clinicians, and why or why not. We don’t prevent clinicians from joining, but we also don’t encourage it. From purely personal observation of our many online communities, I think many members would not participate if those communities were physician-led, overtly or indirectly. Among our members we have some clinicians who are also patients or caregivers, and it’s interesting to see the dynamic of their involvement in our online communities. Sometimes their comments on a clinical topic are the “last word,” perhaps because the other non-clinician members defer to them. And to be fair, the vast majority of those clinician members do not project themselves in a manner that they want to be the “last word.” We of course want to keep discussions going and encourage multiple viewpoints, so while we welcome the clinical expertise of a nurse with sarcoidosis, or a physician who has survived cancer, their involvement can alter the dynamic of a peer-to-peer patient support community. Thanks again.
Thanks, John! I’m gaining a deeper understanding of the complexities, but I’m not giving up hope for meeting more unicorns (to reference Ted Eytan’s analogy).
I would never, ever, ever participate in a physician led message board. I basically have PTSD from the encounters I’ve had with them as a result of the Cushing’s. I’m bruised and battered. Every time a test comes back, I freak out and feel like I have to beg for my life, especially if it comes back normal, because I KNOW something is wrong. The beauty of all my Cushing’s groups is that I can be me. I can speak openly and freely about how scared I am, what’s bothering me and what my clinical suspicions are. I wouldn’t be able to do that if there was a doctor looking over my shoulder. Not to mention, some of us end up being “guinea pigs” and leading others in the group to other things that may be affecting them too. We’re free to bat around ideas and come up with new things. When you are as bruised and battered as some of us are, the last thing you want to do is talk to ANOTHER physician, in a lot of cases, the physician is the enemy. They are the one that provides more pain than they fix. If MD’s would open their mind, their hearts, and their brains, I might consider it in the future on a trial basis…
I am not opposed though to an open messaging system between myself and my physicians where ideas can be shared freely with no recourse against the patient. One of the most frustrating things with my latest endo is the lack of mutual communication. It’s always one way. Myself to them or them back to me, but I’m not able to interact and that can be very hard to deal with.
Hockeygirl,
Great comments and SO valid. A lot of members of our group have medical PTSD. I can’t even tell you how sick some our kids are and the doctors won’t believe the moms. How can it not be a problem when a child is falling off the weight chart and mom is feeding the baby with an eye dropper and hasn’t slept at all in 2 months and is halucinating? We don’t allow our members to write the names of doctors or hospitals in our discussion groups because the stories are horrifying. We have them discuss it offline and they do so frequently.
Re more open communication:
One thing I adore about attending conference is the chance to go out to dinner and DEBATE studies with the docs. “You rely on Study X that said a lifestyle change was not effective? I hated that study because it was done in the hospital under circumstances that were not even close to real-world. Let’s do a study together of the same lifestyle change but let’s do it the way the patients say it works.” “Study Y did show that the drug wasn’t effective OVERALL, but did you read closely enough to see that it worked amazingly well for a few patients? Why not focus on figuring out why instead of avoiding that drug?” I’m polite but I have no fear of debating studies. I’ve had docs ask me to provide them with a print-out at breakfast the next day.
I would never participate in a physician led message board or a board that allows physician’s. After being treated so poorly by 11 doctors in only six yrs. I hardly trust a doctor now. I was told for yrs. I was fat a needed to exercise only to find out I suffer with Cushing’s disease & now that I have a diagnoses I’m still struggling to receive good treatment. I have lost allot of faith in doctors but gained so much trust & faith in my fellow cushies.
Arriving late to a phenomenal discussion..
Interesting issue about clinician participation in online groups. Not sure it’s been studied, but if people say it effects their participation, then it does.
I had a recent experience where a best friend was suffering from scleroderma, an uncommon but progressive and disabling autoimmune disorder. Looking for social support that her multiple-specialist-doctors couldn’t provide, I looked online. Only one site seemed to have critical mass: http://www.sclero.org/forums/index.php
It didn’t have good usability but did have forums. Looking deeper, I found doctors and nurses were participants. There was good peer-to-peer support, but even I croaked (I’m a doc) when I read posts by clinicians. Too medical! Too focused on the disease and not a person’s LIFE! I couldn’t figure out how to characterize this site, and I wondered how many would find the site valuable. Or keep going back. (ads and requests for donations also made me wonder, too..)
I did not send my friend the URL.
I think there’s a role for both peer-only support, and peer-expert support. Like Ted talked about earlier, secure emails are awesome. But they don’t connect people to ALL the experts needed.
I wonder if the problem with clinician participation isn’t so much their title, but their style and public “face”? Are they a lecturing know-it-all or someone who can provide information in a truly patient-centered and unbiased way?
One last comment.
Last year I worked with Holly Jimison and others on an AHRQ effectiveness report on interactive health IT for chronic conditions. We tried to answer the question WHAT functions/services affected USAGE of consumer tools? Only a handful of studies reported usage frequency, but empirically, if a tool included peer support OR secure email with an expert — people logged on more frequently (page 24).
http://www.ahrq.gov/downloads/pub/evidence/pdf/hitbarriers/hitbar.pdf
Makes sense. You don’t wake up in the morning to say, get more diabetes education. You wake up and wonder if so-and-so responded to my comment. Like Susannah did after she posted her question :-)
Sue,
Your perspective on the scleroderma site is so telling – you didn’t even forward it to your friend!
And I can’t wait to dig into the report you wrote – thanks so much.
I’ve recently been hearing people say (in meetings and in publications) that mobile health apps will really take off when clinicians start recommending them. If I have the chance, I try to point out that clinician recommendations won’t scale – peer recommendations will.
And yet. There are people who may like their clinician to make recommendations about where to go online. And there are people who would otherwise not know about online resources which could help them. If health advocates rely only on word of mouth and the press to highlight useful resources for patients, we may never reach all the people who could benefit.
I’m also reminded of Jessie Gruman’s wonderful essay about why it’s taken so long for patients and physicians to work together in partnership:
http://blog.preparedpatientforum.org/blog/2011/03/its-time-to-tango/
It takes us back to what Ted Eytan said: Focus on the cultural change, not the tools.
@Sue Woods, I love what you posted.
Good forums are important and they cost money. I suspect that’s the donation/ad issue. Some forums which are supposedly good cost money to join/subscribe. If a forum isn’t “easy” to use, it’s useless. And so many folks need these forums but can’t afford to pay. If there is a major donor, then the donor feels empowered to ask for changes/make changes which may not be in the best interest of the participants.
“You don’t wake up in the morning to say, get more diabetes education. You wake up and wonder if so-and-so responded to my comment. Like Susannah did after she posted her question :-)” Exactly!
I think the hardest part about going through a rare or little understood disease is that other people who haven’t gone through it just don’t “get it” about so many things. The beauty of peer-to-peer support groups is that the members “get it”. Many of us do wake up and run to see if someone responded, often before our first cup of coffee. We joke about that.
Drinking my first cup of coffee and hitting this discussion before even checking my e-mail. Enjoying it discussion immensely. You folks have some really valuable input.
FYI, we tried paid membership of $25 years ago. The basic site was free but posting messages and receiving newsletters required a membership fee. We often waived it without any questions.
But paid membership backfired. When we did a member survey one person explained it to us. She said that joining an organization means admitting you are really sick. Since our disease is generally not life-long, joining also means that you admit it isn’t going away tomorrow. So joining is a way of admitting defeat.
Yikes.
So now our membership just involves giving us an e-mail and a zip code and permission to receive occasional updates in the form of e-newsletters or e-letters begging for donations.
OK, time to go deal with e-mail.
What is sad is that right now I’m testing for carcinoid and I’m MORE scared of how the doctors will treat me than I am of cancer. How sad and pathetic is that? I’ve been told so many times you CAN’T have that, it’s too rare or lets test again because this test has to be lab error that I no longer trust MD’s, ND’s, OD’s, whomever to treat me quickly, efficiently, and with care. The only people I have right now are my Cushie’s. They understand my fear, they understand my pain. It took me 20 minutes to get the courage to walk my sample into the lab today not because of the fear I’ll be told I have carcinoid, but because I fear the doctor telling me, “You can’t have ANOTHER rare disease, so lets continue to test and monitor” while I get sicker and sicker. Why would I want those feelings to haunt me on my message boards too? The message boards are the only escape I have. They are the only place where I can freely say, this is what I’m scared of and have people understand and not judge.
Hockeygirl, have you joined the ACOR carcinoid listserv http://www.lsoft.com/scripts/wl.exe?SL1=CARCINOID&H=LISTSERV.ACOR.ORG or other patient groups?
A family friend has been living with carcinoid for at least 15 years, which beats the crap out of the predicted odds! She’s mentioned a carcinoid group on Yahoo. I’m not sure if this is it but give this a try: http://groups.yahoo.com/group/CARCINOID-y/ If it’s not what you need, come back and say so, and I’ll connect you with my friend directly. She got hers from Agent Orange in Vietnam, a situation that can be a cesspool of politics and denial. Whatever information you need to arm yourself with, including which doctors “get it,” I bet it’s in the circles she talks with.
Dave, when you write “Whatever information you need to arm yourself with, including which doctors “get it,” I bet it’s in the circles she talks with.” I am afraid this is not always the case in rare disease circles. Various online communities pop-up because of disagreements between people who want to be leaders of these groups or because they don;t like the way an existing group runs. And often great schisms develop between the groups, with each community having an exceptional rapport with 1 or more true specialists. Sometimes, as may be the case with carcinoid syndrome, different groups may refer patients to different specialists and will not mention other specialists associated with the “competing” communities. Sad, but true.
Hockeygirl, have you looked into the Carcinoid Foundation?
If you are diagnosed with carcinomas syndrome, they should be able to help you, in addition to belonging to 1 or more of the carcinoid patient communities (where, incidentally, many patients survive the disease for very very long times)
Gilles,
> I’m afraid this is not always the case with rare diseases
Understood! For one thing, that’s why I said “I bet…” instead of “I’m sure.” :–) For another, in this particular case, my friend has talked about her peers sharing info on which docs can be relied on.
I did not, though, know about the competing groups you cite. Thanks.