Federal agencies can, and should, be the first responders to health questions. Social media can help.
That’s my summary of presentations from last week’s National Conference on Health Communication, Marketing and Media conference, where I had the sense, once again, of a tribal meeting, but this one had the urgency of war council. The enemy is legion: flu virus and Salmonella, yes, but also misinformation and misunderstanding.
I was on the edge of my seat for most of the conference (OK, yeah, I am a health geek):
- The FDA and CDC teamed up to create YouTube channels, a searchable database of recalled products, and other social media campaigns during the Salmonella Typhimurium outbreak in January.
- The Mexican government’s efforts to contain the “swine flu” were hampered by the fact that all their plans had assumed the pandemic would start in Asia (but the president’s on-air demo of how to cover a sneeze apparently helped focus the nation).
- AIDS.gov and CDC are deploying contests, blogs, and social network profiles to empower people to become health advocates.
Unfortunately, the full program is only available as a PDF, making it hard for you to confirm this, but believe me, it was an extraordinary event (check the #NCHCMM09 Tweets for proof).
Janice Nall of the National Center for Health Marketing at the CDC moderated a panel on social media’s promise for public health which included me, Jeff Lee of Distributive Networks, and Bob McKinnon of YELLOWBRICKROAD Communications.
Nall kicked things off by talking about Social Media at CDC, which lists all their initiatives, from Twitter and Flickr to MySpace and Second Life. Between April-August 2009, their H1N1 flu-related videos have been viewed over 2 million times, they amassed over 700,000 Twitter followers, and 17.19 million people subscribed to their H1N1 RSS feed.
When it was my turn, I held up two symbols of a possible future for public health campaigns: a tube of sunscreen and my mobile phone.
Weather report and sunscreen reminder
The Center for Connected Health conducted a randomized trial in 2008 using text messaging to send a daily weather report and reminder to apply sunscreen. The control group did not receive any reminders. Everyone got a tube of sunscreen with a monitor strapped onto it so every time the cap was removed, a text message was sent back to the researchers. Study participants who received text reminders applied the sunscreen an average of 56% of the time, compared with the control group, which had a mean daily adherence rate of 30%.
With 85% of American adults carrying cell phones these days, it is time to think about how mobile, social technology can help public health officials do their jobs.
My role on a panel is often to provide baseline data that can serve as the context for the discussion. Here’s what I chose this time:
The Pew Internet Project estimates that 79% of American adults use the internet and many of them not only gather and share health information online, but make health decisions based on what they find (see the Pew Internet/California HealthCare Foundation report: The Social Life of Health Information).
56% of American adults have accessed the internet via a wireless connection, whether that’s on a laptop, desktop, mobile device, game console, or Kindle – we included all of those in our definition (see report: Wireless Internet Use).
Wireless internet access has created the state of being “always connected.” The consequence is that mobile is changing us, once again, as internet users.
It turns out that about 4 in 10 adults are what we call Motivated by Mobility. Mobile access creates a “continual information exchange” that feeds on itself and reinforces collaborative behavior.
For some mobile access is a supplement. For others it’s their daily bread.
Over the last few years we have been tracking the rise of wireless internet access, noticing significant differences between African American and white adults. Our recent survey confirmed it: African Americans are the most active users of the mobile internet.
48% of African American adults have gone online using a mobile device, compared with 28% of white adults.
This survey was conducted only in English so the Latino sample skews up in terms of education and income, which means we see a higher than normal rate of technology uptake: 47% of Latino adults have gone online using a mobile device.
Differences between whites and African Americans are erased when we redefine internet access to include mobile access.
The consequence of this increased bandwidth and mobility is that these users are more likely than other adults to access health information online.
But just as mobile access is a supplement to traditional access, online health resources are a supplement to traditional sources of care.
The vast majority of people with a health question want to consult a health professional. The second most popular choice is friends and family. Third choice: the internet and books. As we saw in the Healthfinder.gov panel at the conference, low-literacy populations prefer to print out information. They are not likely to read on-screen. It is important to keep that option available.
But many e-patients are using the internet in new ways. Some are going online to connect, in fact, with what we think of as traditional sources: health professionals, friends, and family members.
Technology can enable the human connection in health care.
Here are two examples of mobile, social technology and the democratization of health information.
The first example is PatientsLikeMe, a social network for people living with chronic conditions.
(By the way, Pew Internet surveys find that 35% of adults use social network sites like MySpace, Facebook, and LinkedIn. If you have not yet joined one of these sites, don’t hesitate. Seeing how these sites work will be as revolutionary as the first time you saw the Web.)
PatientsLikeMe is more like an information network than a social network since they are helping people to record the observations of daily living which can inform someone’s treatment. But they network those records so fellow patients can benefit from other people’s data.
Peer to peer advice turns out to be powerful and influential. A survey of HIV community members on PatientsLikeMe found that two-thirds of respondents said they are more knowledgeable about risks and benefits of a “treatment holiday” because of what they have learned from other users at PatientsLikeMe. Seven in ten said using PLM has increased their interest in results of tests ordered by the doctor treating their HIV.
These patients are under the care of health professionals, but exchanging data, insights, and information to take better care of themselves.
Back to Pew Internet’s survey, we found that 41% of e-patients have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog. The “just in time someone like me” is often a significant source of health information – how can public health campaigns be tailored to take advantage of this trend?
The second example is the text message campaign created by Connected Health. The messages were nothing fancy, just a weather report and a reminder to apply sunscreen, yet they increased adherence. What other reminders or alerts can be sent via text messages? How can you enable the sharing of those messages?
Pew Internet surveys find:
- 6 in 10 e-patients access user-generated content related to health.
- 20% of e-patients have posted or shared such content.
- 53% of e-patients have consulted Wikipedia.
- Fully 60% of e-patients say that they or someone they know has been helped by online health information, up from 31% in 2006.
- The percentage who say they or someone they know has been harmed has remained flat – just 3%.
My conclusion: 8 in 10 adults have the basic capacity to receive a public health message. Figure out how to take advantage of that reality. But also keep in mind the 15% of adults who are “truly disconnected” – not only are they offline in an online world, but they are likely to say they don’t even know anyone who is online. They are down in a pocket, far away from the world of smart phones, and yet they are part of our future, too.
Jeff Lee of Distributive Networks then gave a very engaging presentation about how the Obama campaign harnessed their followers’ passion using ringtones, Zip code-targeted text messages, and other calls to action. He called SMS the FedEx of communications – messages are opened immediately. But he urged public health leaders to use mobile apps to push people toward deeper content on the Web or even a call-in center.
The take-aways I wrote down:
- Simple solutions map best to existing user behavior.
- Don’t underestimate data collection opportunities.
Bob McKinnon of YELLOWBRICKROAD switched gears by quoting Ralph Waldo Emerson’s dour perspective on technology, the gist of which can be summarized with this short quote:
The harm of improved technology may balance out its good.
I don’t have his slides, but I scribbled madly as McKinnon warned:
- Don’t rush to be new and lose your relevance.
- Beautiful websites and online campaigns fall flat without support from offline campaigns.
- Don’t underestimate the power of empathy in communicating causes (adding his own dig at Twitter: Can you tweet empathy?)
- Fear suppresses behavior, so encourage small steps.
With that, I’ll encourage you to take a small step and write a comment:
- Whether you were at the event or observing from the outside, what were your take-aways?
- What topics should be on the agenda for next year’s NCHCMM? (An organizer, @jaybernhardt, wants to know)
- Where do you come down on the social media & mobile apps question? Which audiences are ready for this stuff and which are not?
Thanks for summarizing the conference for those of us unable to attend. As a librarian, I’m always advocating educating the public about what resources to trust when it comes to health information. Before it was just which websites to trust. But with new social media tools, it is even more difficult to judge content. So it makes sense that you suggest turning to federal agencies for reliable health information. It is refreshing to see more social media presence by many of the federal agencies; they are not only pushing content but are participating in the conversation as well. The food recalls by the FDA and the H1N1 virus scare are perfect examples of how these agencies jumped in to help. Many libraries, including the National Library of Medicine, used the swine flu widget provided by the CDC on their homepage to communicate the information to their users. Librarians may not have been present at NCHCMM09 but they are listening and quietly joining forces in any way possible to provide reliable and timely content to their users.
As for mobile apps, it goes back to content you can trust. Just today, Wikipedia announced their iPhone app. I have a love/hate relationship with Wikipedia so this new app will be one to watch since many people (including doctors) trust Wikipedia with health related content. However, the new partnership of NIH with Wikipedia gives me hope, and shows that federal agencies really are trying hard to stay on top of things in the social media realm.
It was great being around such a huge group of people that are all pushing for the cause of prevention and health care reform. Being in Nevada where we have quite a bit of open space and rural areas, there were a lot of takeaway messages from the conference. I really enjoyed Bill Novelli’s keynote address. His comments on health care reform were right on, especially that leadership counts, being an advocate for change, and needing to pursue public/private partnerships for change to happen.
I thoroughly enjoyed Dr. Ellery’s talk regarding INShape Indiana where he gave some of the best insight of all, to determine usability for your audiences you need to evaluate if it is manageable, meaningful, and comprehensible to your target audience. Dr. Huerta preached being consistent with your message is key in reaching target groups.
Perhaps the best message to reflect upon after sharing three days with people that are already on board with social media or about to be is that the “medium is not the message”. Meaning, just because you don’t think that (pick your website) has great content it doesn’t mean that your message can’t resonate if you are using the right message to reach people.
This was my first year attending NCHCMM and it was enlightening & thought provoking. Bill Novelli encouraged us to “do well AND do good.” He reinforced the importance of corporate & personal responsibility along with developing public|private partnerships. Sukle Advertising demonstrated the success of utilizing all communication methods through its “The Line” campaign in Wyoming. While social media is at the forefront, there is still a place for creative print, radio & guerilla marketing. You have to go where people spend their time, do your audience research.
I would have liked more opportunities for interaction – focused topic workgroups, Q&A (the Wednesday session was great), evening events like the TweetUp. I learn a great deal from talking & listening to others – that experience can be just as valuable as attending presentations.
In the world of immunization communication, social media has its place within the bigger social marketing picture. We’re able to disseminate article links, current news & clinic locations quickly. But, we also have to pay attention to traditional communication methods. We need to know where moms spend their time and what they’re looking for.
I’m confident next year’s conference will continue to grow and I’m hopeful there will be more immunization related presentations, as communicating immunization science to the public is a challenging, yet exciting task. I appreciated the “participation powers prevention” message and look forward to incorporating the information acquired in my every day work. Thanks for a great article.
Susannah
It was great to share that panel experience with you. Congrats to Janice on organizing such a strong session.
I’ve turned to Pew data in the past on so many occasions, and I was thrilled to look behind the curtain and get to know one of the fine people who helps pull that information together.
In addition to the great Pew data, I was particularly impressed by your example from the Center for Connected Health. Nearly doubling the adherence rate, based on daily text reminders, is a powerful example of the effectiveness of the mobile device in health care compliance initiatives.
Thanks for summarizing the panel discussion here.
Jeff
Susannah:
The post is both informative and interesting.
Keep up the good work!
Leroy
PS
Folks:
Please make sure you listen to Susannah on my show:
Talking Technology with Leroy Jones, Jr. – PEW RESEARCH CENTER
Susannah, thanks for taking the time to share your thoughts. I was out of the country and really bummed that I couldn’t make this event.
I loved the Connected Health example and it was great you actually anchored it visually with an actual sunscreen tube and phone! Those impressive results remind me of some leadership experiments where managers were sent weekly emails reminding them of the traits they were supposed to be working on. They inevitably did much better with this e-coaching on their next 360 survey, than those who had no coaching.
Possibilities for mobile are really endless and you’ve reminded me to spend more time and attention on this aspect of patient empowerment tools.
Susannah – Thanks so much for sharing your valuable information and insights. The more I think about the use of social media for health the more it echoes what personalized medicine is essentially about: delivering the right care/medicine for the right person at the right time…in this case via the right medium in the right place. The Pew reports are instrumental in helping us to tailor all these elements.
FYI, there is an upcoming mHealth Summit on Mobile Technologies as a Platform for Health Research and Healthcare Delivery. It’s hosted by the Foundation for the National Institutes of Health and will be Oct 29-30 in Wash DC. See http://tinyurl.com/pwkazq
Thanks for this report Susannah. The conference sounds fascinating but as I live in Australia, I was unable to attend.
I always look forward to your observations and study reports. You stated that the full program is available as a PDF – where is this available?
Thanks again,
Tania
Hi everyone,
First, apologies for mentioning the PDF and not linking to it:
http://www.cdc.gov/healthmarketing/NCHCMM2009/pdf/program_book.pdf
Second, thanks so much for sharing your notes on the event. I think the value of a good conference is in what people remember, the lines that play over in your mind as you go forward in your work. It’s our responsibility to share those insights, esp. as budgets are cut and fewer people can attend conferences.
Speaking of attendance, there is something special, as Paul wrote, about being together as a group, and as Heidi wrote, about the chance conversations you have in the hallway or at a tweetup. I do find that Twitter and other social media are a pretty good substitute for being at some conferences, but there is an art to live tweeting. I’d love to connect to a tip sheet or guide on how best to do it. Or, if you have observations, please share them!
Okay, I just realized I had a big stupid mental block about this whole subject because that happens whenever I see an acronym I don’t understand, and the effect is quadrupled when it’s long and unpronounceable.
For acronymoplegics like me, NCHCMM is the National Conference on Health Communication, Marketing, and Media.
Okay, that’s done. Now I can read it.
> it is time to think about how mobile, social technology
> can help public health officials do their jobs.
And at virtually no cost! This kind of solution scales magnificently, unlike many public outreach programs.
=======
What do I want to see next year? Aside from spelling out the event name :), I’ll want to see:
1. An update on your statistics. We’re at a pivot point, when many decisions are being made, and your statistics on adoption of mobile technology are compelling. I don’t want to wait another 8 years for the next update! Show that the change is happening NOW.
2. Case studies, whether they’re nicely controlled like your sunscreen story or even if they’re anecdotal. Prove to us that it’s real and it makes a difference.
#1 and 2 are for the policy geeks, to motivate focus on this area. #3 is to help design solutions:
3. A taxonomy of infopaths. (I can’t believe I just made up that mouthful.) I mean a model, a framework, for understanding how pivotal information can travel from its home (in some bookcase) to the point where it’s needed.
–What are the categories of such information?
–What are the modalities of intervention? (Reminders, alerts, responses to queries, other?)
–How does the info travel today, when it travels?
–Where do people get that info today? (Your data talks about this.)
This should illuminate the places where new media can get the job done more effectively. (Hint: put the info where they’re already looking.)
And #4 is to make it a no-brainer for the people who make go / no-go decisions:
4. ROI. Make some sober, well-thought-out estimates of the cost savings achieved by preventing complications, and compare it to the cost of the program. (Let’s look for immediate payback, too, not just “maybe someday.”)
=====
Note: we-all should get busy on this now, because as more and more people fall out of the overpriced insurance system (as we’ve written here), a whole lot of people are going to be on their own for dealing with health issues.
Here’s a cheesy mixed metaphor from “Who Wants To Be A Millionaire”: We may indeed get to the point where “Phone a friend” *is* your lifeline. Let’s feed that phone.
I love this idea. Dude: cell phone as patient empowerment tool. Off the grid! Get the info into their hands! Don’t require going through the broken hospital/clinic system; put the info right in people’s hands. I LOVE it.
Susannah: I am REALLY into social media for patients and we’ve started sending Flip cameras to patients, building “powerful patient” videos (see our http://www.patientpower.info site) and then posting them all over the place. I think this would be great for the NCI and having patients show others what it is like to be in a trial. Was the NCI active in the conference?
You’re right, Dave, I fell into the acronym trap. It is not a catchy name for a conference. How about Public Health 2.0 instead?
I think each of these comments could be a post on their own and generate discussions:
@shamsha: What are your markers for trustworthy information online? Wikipedians say that if an article has been heavily edited over many sessions, it’s more accurate – do you agree?
@Paul: I regretted missing those keynotes you mentioned – can you tell more about what Dr. Huerta said? Did he give specific tips about reaching immigrant populations?
@Heidi: I love your point about hybrid communication strategies and finding out where moms actually are (not where you think they are). How do you go about doing that?
@Jeff: Yes, Connected Health is doing important work in this area. Another source for similar studies: ARQH’s Health Care Innovations Exchange http://www.innovations.ahrq.gov/
@Leroy: Thanks again for the great conversation, captured on your podcast. We talked about how mobile is erasing differences between African American & white adults when it comes to access and your own observations about that trend. I’d love for you to share more about that.
@Carol, there are 4 excellent conferences happening that week! Kevin’s e-Patients Connections in Philly (I’ll be there), TEDMED in San Diego (I wish), BIL:PIL in San Diego (ditto), and mHealth Summit in DC (want to learn more). Mark Hawker & co. have put together a health geek meeting calendar in case you want to drive yourself crazy with envy & jealousy & wanderlust: http://is.gd/2lCKH
Dave, I am sending your comments straight to the conference organizers — such excellent ideas that I hope they will use (or that some other conference planner will steal).
Thanks Susannah for the insightful post and everyone above for the great ideas and suggestions. We will definitely use these ideas for the 4th Annual National Conference on Health Communication, Marketing, and Media in 2010!
You can read all the 2009 conference tweets at #NCHCMM09
Susannah,
This is a GREAT recap of some of the most poignant conversations that took place during the conference. I was likewise hanging on the edge of my seat through most of the event, trying to absorb like a sponge each detail that I could use in my own writings and thoughts.
The conference really marks a great thirst for forward movement in public health. Mobile technology, social networks and other aspects of social media are making waves in many other fields – public health SHOULD be making use of it. My takeaways:
— The tools that are out there do have merit in public health and there are various ways to make use of them
— There are still many, many public health professionals who are in the dark about some of the basic aspects of this social movement and we need to focus on bringing up the rear
— The gov’t agencies are paying attening and setting a great example for what needs to be done. Local/state health departments need the same kind of backing and knowledge…in a big way
— Evaluation of these campaigns and use of social media is going to be very important to continuing to prove merit
For next year:
— Bring in more state/local health departments who have made use of the tools and listen to how they have broken down the red tape (i interviewed Salt Lake Valley Health Dept on my blog – great starting point)
— Specific time to network and discuss with others in a free form setting
On social media/mobile:
— We need to start really putting best practices in place for local gov’t to establish these tools/campaigns. The people who are advoacates inside these places are sometimes met with alot of resistance
— Mobile is great but in the US there needs to be some big changes among telecom in order to make the same kind of progress that mHealth is making around the world (perfect opp for ADVOCACY)
— ALL public health professionals need to be getting a baseline knowledge of the new social technology landscape. If you aren’t on board, get out the way and let those who want to make some changes get in on things. Fine to be a sideliner, just don’t be a roadblock.
Susannah and all- VERY interesting. I work for a health system with 8,000+ employees and they have blocked all social networking sites at work. I can’t tweet, or get to my facebook page, etc. As a result, as an IT professional, I know very little about twitter. I use Facebook at home so it’s more familiar.
Isn’t that ironic? IT, health system, hospitals etc. – and no access to these sites while at work…!
Some thoughts for next year:
1) Organizational Social Media Policies – they will be important in the future. We already know that government agencies often won’t allow access by staff and that it can be tricky business mixing work with people’s personal social media networks (people are getting fired from jobs because of what they say online). I work for a nonprofit called the Louisiana Public Health Institute and we don’t (yet) have a social media policy though we will meet soon toward developing one. I’m sure our IT staff can’t wait to tell people what they can and can’t do in this sphere. As an extension of this discussion, I hope to start a social media bureau consisting of staff and partners who agree to do nothing more that to carry on/plug discussions in their own social media networks related to social marketing campaigns that we develop/manage…this is also tricky because it can be considered spam by some – so online social network etiquette and approach are important. With that said, there could be at least a couple different tracks developing: 1) using one’s own personal social media networks as a “in” for sharing/disseminating prevention messages versus 2) an organization’s desire to strategically develop brands/campaigns within various social media platforms as a part of a social marketing strategy that seeks to communicate with specific populations of interest. In the mean time, it might be an easy first step to think about how program staff can engage personal networks with health promotion messaging. Anyway, I had more to say on this, but I can’t remember at the moment.
2) The Continuing Evaluation Challenge of Social Media Efforts. We don’t appear to be very close to “best practices” and it seems like public health orgs are often confused/unsure what do in the absence of best practices. While we continue to guide educate public health leaders toward adopting the usage of social media as a worthwhile part health promotion/disease prevention strategies, we also need to quickly move forward in finding/documenting specific social media campaigns exhibit impact on attitudes/behaviors so that others can model those “effective tactics.” The sunscreen txt campaign is a good start, and perhaps the small group approach is the best way to move forward as they are manageable. I know San Fran has a STD txt campaign (related to MTV) and they can probably show an increase in referrals/screenings as a result…seems like txt campaigns provide a clearer promise of evaluating efficacy because it is a closed systems…but txt campaigns are qualitatively different (yet related) to social media/marketing efforts. So far, I’ve been to multiple meetings/sessions related to evaluation social media efforts along the lines of tracking the “number of conversations, comments, tweets, re-tweets, etc.” But somehow, for me at least, this seems to be slightly missing the point…we can document the number of conversations, etc. all we want but it doesn’t help much if we can’t show how this affects attitudes/behaviors. And when social media tactics are combined with larger paid/earned campaigns it seems very difficult to tease out the effects of these tactics individually. It all ads up to an immense and complex evaluation challenge. Not as well stated as what I first wrote, but I think there is a point made somewhere here.
3) Social Media and Health Policy Advocacy…I think this might be perhaps the most clear current direction/promise for social media and public health. Seems like there is a social media health promotion/disease prevention track and another (related yet distinct) concerning social media and it’s promise for health policy advocacy. I noticed the Obama administration just unveiled a “tweet your Senator” campaign related to healthcare reform…which I find very interesting. Seems like politics and advocacy campaigns are perhaps ideally suited for this new social media world we live in…it becomes a numbers game and the victors (in theory) shall be the ones who can more effectively organize constituents with a single voice via social media networks and get them to take action whether they be calls, letters, posts, tweets, etc. But of course our opposition will be working on developing the same tactics with backing by corporate interests so the battle is much easier described than won. Seems like we are probably closer to developing emerging best practices for social media related to Health Policy Advocacy versus traditional health promotion/disease prevention campaigns.
Anyway, it was an incredible conference to be a part of and I thoroughly enjoyed its spirit. Kudos to all involved. I’ll continue to think about it and hopefully share more later.
Sincerely,
Jason Melancon
Susannah:
I’m with Dave; wuz thinking how did I miss this one completely? Great topic, excellent pre-conference materials, etc. Then it occurred to me the automatic ‘ignore’ button that got triggered by a lengthy and semantically unintelligble hashtag. Net/net, I tuned out.
Thank you for the recap and post, though. Clearly the near ubiquitous nature of mobile apps brings the message to the medium; effectively and in real time.
Government, whether HHS, FDA or CDC is clearly modeling for the private sector what early adopter added-value can look like.
Kudos to your reporting!
Thanks, Gregg! I just updated the top of the post with the whole name of the event spelled out.
But I’m still thinking of it as Public Health 2.0, with all apologies to the Health 2.0 conference organizers!
Deborah: Now that is a tragic and unfortunately more of the same energy that has presided over our slide into complete system meltdown!
Just stick your head in the sand, maybe it will pass?
Thanks to Susannah for getting this dialogue going. We at NCHM look forward to reviewing all these suggestions to ensure we can improve the programming and continue to attract such a great crowd.
Ask on Twitter and you shall receive:
Gilles Frydman has created an archive of all the tweets from #NCHCMM09:
http://healthbirds.com/tagsearch.html?tag=NCHCMM09.
One caveat: A quick review of tweets credited to me shows that it’s not a perfect archive, so use caution before quoting from it. Otherwise, it’s a great resource for the gist of the event in real time.
The tweet aggregation at
http://healthbirds.com/tagsearch.html?tag=NCHCMM09
has been fixed.
Twitter went through another DDOS (Distributed Denial of Service) attack a few days back at the time I used the search API to collect the tweets. The results from the Twitter search API were more than 95% erroneous (almost all results had a bad Twitter User ID).
Susannah: Thank you for an insightful recap of the Atlanta conference, which I also enjoyed very much. A few points in your essay particularly resonated in me as I engage in my own research on social media and health:
-Your discussion of the increasing number of people “motivated by mobility” suggests that social media as health communication tools have a greater potential of reaching people “where they live, work, and play” in real-time. This underscores the importance of continuing to track the use of mobile devices in the population, both in the US and globally.
-In a recent research study using data from the NCI-sponsored Health Information National Trends Survey (HINTS 2007), we found a parallel trend to your discussion of mobile Internet in African Americans’ current use of social media: Among individuals with Internet access, African Americans are more likely to engage in social media (which was measured by self-reported participation in blogging, social-networking sites, and online support groups) than Whites. The implications of these findings on the question of the Digital Divide are tremendous. It is possible that with broader and more equitable Internet access (very possibly spurred by mobile/wireless technologies), the divide is narrowing and may potentially disappear. (Our study is currently under review at JMIR; the results should become available soon.)
Thank you! This information is invaluable.
Sylvia,
Thank you so much for adding those insights! I love the HINTS data and recommend it to everyone:
http://hints.cancer.gov/index.jsp
Mobile health is a very important area for researchers, practitioners, policymakers, and citizens to pay attention to.
There will be an mHealth Summit at the end of October in DC, for example:
http://www.fic.nih.gov/news/events/mhealthsummit.htm
Mobihealthnews is another excellent resource:
http://mobihealthnews.com/
If anyone knows of other conferences, resources, etc. related to mHealth please post them.
Susannah, Your meeting summary was wonderful. I was hoping you or someone could identify any other studies like the Connected Health example. I am trying to make an argument for the development of social networks for patients. If I had real data…ie. patients that particpate in health related social networking have better outcomes…that would be helpful.
Also other examples where doctors/healthcare practitioners used social media to increase the quality of their care would be great.
Thanks for your help.
John,
Thanks so much! One resource is the Agency for Healthcare Research and Quality’s Health Care Innovations Exchange: http://www.innovations.ahrq.gov/
Some other people who track such projects or who have interesting things to say about them:
Francisco Lupiáñez-Villanueva
http://www.ictconsequences.net/
John Moore
http://chilmarkresearch.com/
Bertalan Meskó
http://scienceroll.com/
Gunther Eysenbach
http://www.medicine20congress.com/ocs/index.php/med/med2009
and
http://www.jmir.org/
(Note: Not at all a comprehensive list! Please add other names below.)
Thank you, Susannah, for the mention. I would add http://www.webicina.com as it fits the definition perfectly.
Hi Susannah,
Like others, completely missed out on this event but reading your summary certainly helped fill in some of the gaps.
As usual, Pew’s research is a great source for analysts like I who are trying to understand/see the inflection points in the rapidly evolving market for consumer-facing health technology. Something I’ve been arguing for sometime is that Health is Mobile, it dos not happen when you are sitting in front of a laptop or your computer, it happens on the go – thus mHealth will be the future for most consumer-health engagement activities.
And mHealth will come in many forms, not just a cell phone, though that will dominate. Mobile, wearable biometric devices, wearable, nano-fabrics with mesh sensor networks, Kindle-like devices, the list goes on. Fantastic time to be an analyst as the future of health will be one where we will take on more direct responsibility for self-mgmt and the technology will be there to assist and allow us to tap “experts” on the fly as needed.
Thank you, Susannah, for the mention. Please do not hesitate to contact me if you need more information about our research in Catalonia.
regarding evidence that social networks are powerful influences in health care, we have published one study on this. for abstract see: http://tinyurl.com/mhv5a6, I have a pdf i can send also. In the context of Connected Health, social networking is a powerful coaching tool, we think. Imagine having your health information (vital signs, step count, mood indicator, caloric intake) posted automatically to your Facebook page and being transparent with your friends about the goals you are achieving (or not) with respect to your health status.
While we do not have quantitative data, I can say the Cushing’s community most certainly has been and is hugely instrumental in saving lives.
Mary O’Connor, the founder and owner of the Cushing’s Help website (http://www.cushings-help.com) and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garnered from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.
Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.
The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.
From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.
Doctors send patients to the boards and the other sites for support and help. They join us on the BlogTalkRadio show. They know us. We know them.
Most of all, lives have been saved because of this. Not one, not two, but countless. And lives have been changed with the right medical help and knowledge. It is hard to quantify such data, although we’d love to try. If anyone has ideas about how to do that, we have a community willing to do it. Several of us with a research background have discussed doing it. Sometimes, though, we aren’t objective enough, I think. Other times, I think we are missing a treasure trove of valuable information.
Berci, John, Francisco, Joe & Robin,
Thanks so much for sharing your insights. I put out the call on Twitter (my favorite mental snack shop) and got back the equivalent of good “slow food” (http://bit.ly/15eOt – thanks to @DrGreene for introducing me to that site)
Other responses from the Twittersphere:
@sterflu: just a thought, but patients most in need of health care might be least likely to be connected on frequent basis to Internet
My response: ppl w/chronic conditions are less likely to have access – but once online they use it w/passion http://bit.ly/A4Cjh
@mikey3982: Maybe there are some diseases where there is less of a correlation to social class? trying to think of some?
My response: Excellent q re social class & chronic disease (age is a big factor) too – any pointers welcome (and I’ll comb my data)
Plus some more sites to explore for evidence:
@Lauren_Rinker: help w/question re social networks & health: http://bit.ly/2fg253. See this for example: http://www.healthafterchemo.com
@kfatweets: We have experienced very similar growth, empowerment and collaboration in our online community as well. (http://www.kidswithfoodallergies.org/)
http://www.inspire.com/
Please add others!
Susannah, here is this: Racial/Socioeconomic factors predictors to admission in high-quality pituitary centers which I blogged about in May. It’s a study done by Johns Hopkins School of Medicine.
“56% of American adults have accessed the internet via a wireless connection, whether that’s on a laptop, desktop, mobile device, game console, or Kindle – we included all of those in our definition”
Speaking of that Pew Research report, a representative of Pew just discussed its findings in a recent podcast about changing online demographics.