Medicine 2.0 Day One

My schedule only allowed me to attend Day One of the fantastically rich Medicine 2.0 Congress being held this weekend in Boston. I thought I’d share my impressions and notes in case they spark inspiration for other people, as each presenter and hallway conversation did for me.

When I arrived at 7:30am, there was no line at the registration desk, so I grabbed my badge (created in the brilliant style of last year’s, as designed by Larry Chu) and started chatting with people.

I had a wonderful talk with Michelle Eberle, a medical librarian working the National Library of Medicine table (sadly, I didn’t get her name) (updated thanks to @SeerGenius). She told me that one of the most useful Pew Internet data points is this one, from a 2009 report:

Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources…”

  • 86% of all adults ask a health professional, such as a doctor.
  • 68% of all adults ask a friend or family member.
  • 57% of all adults use the internet.
  • 54% use books or other printed reference material.
  • 33% contact their insurance provider.
  • 5% use another source not mentioned in the list.

She uses it to advocate to her fellow librarians to keep books front and center, even as libraries adapt to the new digital realities. I pointed her to Pew Internet’s Libraries topic page as well as our Libraries in the Digital Age blog.

Gunther Eysenbach, founder of Medicine 2.0, opened the event right on time at 8am, as he said, “because I’m German.” I believe that the organizer deeply influences the personality of a conference. In this case, it is an academic conference, welcoming of researchers, clinicians, patients, and entrepreneurs (roughly in that order). There is also a sense of humor and adventure at Medicine 2.0, which are also aspects of Gunther’s personality (ask me some day about the time he dropped into John Lester‘s Second Life demo as a half-naked avatar).

Jamie Heywood’s keynote was perhaps the 30th speech I’ve seen him deliver and, as always, it was an inspiring indictment of the status quo in medicine. If you haven’t seen him tell the story of PatientLikeMe’s founding, his TEDMED talk is a good introduction. You could still see the fire in his eyes yesterday as he described fighting for his brother’s life, but now he’s banked the coals and is in for the longer fight of saving health care. Hopefully his talk was captured on video and will be released soon.

I stayed in the auditorium for the next installment of the PatientsLikeMe show — Paul Wicks, director of research and development, who joked that Jamie gave the 30,000-foot view and he, Paul, would give the 6 foot 2 view. It also was an enlightening talk, tuned just right for this audience, with insights about how to scale research that asks so much from participants. Here’s my capture of one key “how-to” slide:

Centralize, Rationalize, Simplify

  • More consistent navigation (w/funnelytics)
  • Moderators “floating” not specific communities
  • Admin tools not custom code
  • Greater use of collaborative workspace

Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Manager, followed with what she called the “sea-level view” — a focus on patients themselves. I especially liked her description of how they started with two “buckets” (symptoms and treatments) but responded to their users’ wishes to track many more aspects of their lives. The new bucket list includes:

  • lab tests
  • conditions
  • hospitalizations
  • side effects
  • equipment
  • yoga
  • prayer
  • surgery
  • life events
  • pets

(Note: in no particular order on her slide.)

She closed with a poem she wrote: “To Learn / listen well / to impressions / voiced by patients / first”

At 9:45am I went to a session entitled “Building virtual communities and social networking applications for patients and consumers.” My phone was dead so I couldn’t tweet, but there sat Gonzalo Bacigalupe in the front row, a health geek scribe who was not letting anything get past him, so I rested my fingers.

Colleen Young, manager of the Virtual Hospice community, presented her lessons on “How to Build and Sustain a Thriving Online Health Community.” She has promised to upload her slides, so I’ll link to them later, but here are a few notes I took:

  • “The irony is not lost on us that we are building a thriving community for the dying.”
  • Peer matching = community management at scale, so that crisis response and general support is distributed beyond the moderators.
  • When nurses joined the community, they “solved problems” and stopped conversations cold. This was both good and bad. Now there is a separate section: Ask a Professional.

Constance Johnson, of Duke University, then presented findings from an “Interactive Virtual Environment for Diabetes Self-Management.” Researchers built an island in Second Life and invited people living with diabetes to join it. I’m personally not a big fan of spending a lot of money and time building such things when simpler solutions are available, but I was intrigued by a few of the findings:

  • An unforeseen activity: many people would log on and just sit “outside” listening to the water and wind, instead of visiting the gym, community center, library, grocery store, etc. Follow-up interviews revealed that these participants used the time to self-soothe and reduce their anxiety — a mini vacation within their busy lives.
  • In the grocery store, people could research the nutritional content of every single food on display. The most popular category by far: beverages. People wanted to find out how often they could drink alcohol.
  • People created aspirational avatars, ones that were much thinner than their real selves. When they held a virtual dance party, people said it inspired them to lose some weight and go dancing in real life.
  • Average weight loss among participants was 9 lbs. and social support was cited as a key component of these efforts.

She mentioned that when the study ended, many participants begged them to keep the island running. I asked what their plans are — is it possible that they’d commercialize it with advertising instead of relying on grants? Yes, she said, it’s possible, but her team is now developing game interventions, shifting their focus to this more popular platform.

Daniel Swayze, of the University of Pittsburgh, presented on “How Digital Diabetics Use Social Media Features in Online Patient Communities.” What I liked best about his presentation is that instead of guessing at the quality of information being shared online, he decided to study it. Bravo! I hope to be able to share his slides soon, but the key take-away for me was his finding that when outlier information is posted, the community swarms it and self-corrects.

This was one of many times throughout the day that I thought about Tom Ferguson, the founder of this blog, who was so far ahead of his time. Read what he and Dan Hoch wrote in 2005 about how patient communities self-manage and self-correct. I applaud new research being done in this arena, but let’s stand on the shoulders of giants.

I never made it to my friend Robyn Whittaker’s session on mobile health, so if anyone has notes, please share them or a link in the comments. Instead I had a hallway meeting with Bertalan Meskó, aka Berci, about the challenge of writing a book while keeping up with the usual responsibilities of a day job, a social and family life, etc. I encouraged him to notice when he writes best and to recreate those circumstances. For me, the best time to write is early in the morning. By the evening, my energy dips and I can’t even look at the screen.

I was so into the conversation that I forgot about the time – luckily Kevin Clauson walked by and asked, “Aren’t you presenting?” It was indeed 11:50 and I was the first speaker on an 11:45 panel! I jetted down the aisle and we began our session on “Patient-Provider Collaboration for Patient Safety.” That, by the way, is typical of Medicine 2.0 — every conversation I had was absorbing.

Here’s an outline of what I talked about in my 5 minute overview of Pew Internet’s latest trend data:

I touched on a few of the points I made in my Medicine 2.0 keynote last year — how broadband and mobile access are changing us as internet users, how the “diagnosis difference” makes it more likely for someone living with a chronic condition to consult social health resources. Then I shared a few data points from our 2012 survey, the results of which were just delivered last Tuesday:

  • 18% of U.S. internet users say they have consulted online reviews of particular drugs or medical treatments, which is slightly down from 2010, when 24% said they’d done so.
  • 3% of U.S. internet users say they have posted their experiences with a particular drug or medical treatment online, which is statistically the same as in 2010: 4%.

My point was to show how far we have come in terms of technology adoption, social media use, and getting into the habit of sharing our opinions and experiences online. We review restaurants, hotels, movies… but not yet drugs and treatments. What if people were asked to share those experiences too? What if people used their devices to fill out safety reports? What would that look like?

I have asked my fellow panelists to comment on this post with notes or links to supporting documentation for their part of the presentation.

  • Joe Graedon of the People’s Pharmacy told of how he listens for “signals” of drug safety issues and indeed has documented significant findings based on patients’ reports.
  • Dan Hoch of Harvard Medical School/MGH spoke about the role of the clinician, asking provocative questions about the power of the “shaman” in medicine.
  • Heather Wellington, founder of Patients as Partners, described how a 6-week delay in transferring her identical twin sister’s medical record was a source of extreme stress and considerable danger earlier this year. The photos of her sister and the news of her death brought me and I think everyone to tears.
  • Lisa Gualtieri of Tufts Medical School closed our panel with her own data and observations about how patients share their stories online.

The discussion period was excellent and I hope that people add comments with their own impressions because I did not take notes. E-patient Dave later captured a video interview with me about a couple of the points I made about health website accreditation and information quality, so hopefully he’ll post that soon.

One link I can share is the citation for the May 2001 JAMA article I mentioned, “Health information on the Internet: accessibility, quality, and readability in English and Spanish.” It was a landmark study and people continue to refer to it. But I’ve come to view it as a map of the world in 1491, when what we really need to do is follow our equivalent Lewis, Clark & Sacagawea. The online world has changed completely since 2001.

@Bacigalupe and I at Medicine 2.0 BostonAt lunch I sat on the grass outside with Claire McCarthy and we were joined by Francisco Grajales and Paul Wicks, a wonderful break in the sunshine. Gonzalo snapped this photo, which pretty much captures my mood all day.

Inside, I tried to make my way to see some of the posters, but never got past the entrance because I was having such intense and interesting conversations with people like Richard Jackson of the Joslin Diabetes Center and Reka Lassu of the University of Lugano, Switzerland.

I zipped downstairs to catch Ken Mandl’s stellar presentation about “SMART Platforms: Creating the ‘App Store’ for Health.” If you haven’t read his and Isaac Kohane’s barn-burner of a journal article, “Escaping the EHR Trap — The Future of Health IT,” do so now. The presentations in this session were too technical to describe here — just explore what Open mHealth and SMARTplatforms are doing and you’ll see.

During the Q&A I shared another sneak preview of the Pew Internet/California HealthCare Foundation’s 2012 survey findings: only 11% of cell phone owners have a health app, essentially the same percentage as we found in 2011 and in 2010. I applauded SMART’s focus on clinic-side apps and asked for the panelists reactions. Mandl said yes, their focus is on developing a platform that can be used in many ways, by many people.

Confession time: I didn’t go to any other sessions. I’d stayed up late talking with friends the night before (Alexandra Drane and her husband Antonio Bertone) and my brain was buzzing from all I’d taken in that day. Instead I had impromptu meetings with people like Jill Plevinsky and Myrna Morales, then continued conversations in the sunshine with Paul Wicks and Claire McCarthy (who very kindly gave me a ride to the airport).

I hope someone else can pick up the thread and share notes from more afternoon sessions as well as today’s speakers. The tweets (organized by the #med2 hashtag) have been incredible. Maybe someone will Storify or otherwise capture them? In the meantime, safe travels to everyone at the event — I hope to see you next year in London.

 

 

 

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Posted in: patient networks | pt/doc co-care | reforming hc | research issues | trends & principles

 

 

 

Comments

44 Responses to “Medicine 2.0 Day One”

  1. Teresa Gallagher says:

    What a great review! Rich, detailed,every sentence full of information. Great sidebar on Society for Participatory Medicine also. I just discovered through this post epatients.net, Society for Participatory Medicine, and Medicine 2.0. Looking forward to learning about all of these!

  2. Gonzalo says:

    May be your phone needs a support group. It was great to interrupt your busy day!

    • Susannah Fox says:

      Gonzalo, a highlight of any conference is meeting an online friend in real life for the first time — such a big hug and immediate shared understanding! Thanks for capturing the zeitgeist of the day in that photo.

      Do you plan to blog about your impressions? I’d like to request at least two posts: your substantive notes AND your critique of presentations. Some may think your tweets were harsh, but I think they came from a good heart with the right instincts. We should all be willing to hear critique (although it’s true that most of the time it’s easier to hear in private).

      • I second that idea. Please articulate your critique Gonzalo.

        • Susannah and Colleen,
          You are both right, there is such an interesting smooth transition in the IRL/VL with folks who care. Yes, I will write my entry as soon as I can get through the stuff of the week and numerous deadlines. Extracting from the core my own tweets (I found that microblogging helps me to think, sine it is a conversation). Thanks for adding to these two days and looking forward to more conversations.

  3. So wonderful to see you yesterday at Medicine 2.0. Thank you for capturing so much of the flavor, energy, and connections at this wonderful gathering!
    Pam

  4. Robyn says:

    Thanks for the friendly mention! Here is a very brief summary of my talk on lessons learned on texting for health.
    1. Start with the problem and work out what are the best tools to address it – if mobile is the right tool then you must (surely!) optimize the benefits of mobile in your intervention – for me this is about proactive direct and timely messaging of tailored personalised information at the right times.
    2. Involve end users through out the development process
    3. Constantly review your content and design for your guiding principles – again for me this is the theory and behaviour change techniques, the evidence of what has been shown to work in that field, the source of your intervention (who it comes from) and it’s salience to your target audience.
    I will get my work to put the slides up on the above website soon.
    Thanks!

  5. Sally Okun says:

    Nice overview! Thanks so much for the mention and for posting my poem!

    • Susannah Fox says:

      Of course! I loved it and want to read more of your poetry and insights. I’ve learned so much from the PatientsLikeMe community, it was great to hear more from you about how you’ve nurtured that growth.

  6. Thank you for sharing the first capture of the first day at Medicine 2.0, Susannah. It is always interesting to read the impressions of others. I especially like to hear your take-aways from my presentation. As promised, I uploaded it to SlideShare here:

    http://www.slideshare.net/Colleen_Young/med-20-community-building-sep1512-fnl

    I was surprised and hono(u)red that my work and presentation was chosen for the JMIR award, which means I will be fleshing out the concepts in a published paper.

    PS: What Susannah failed to mention is that a quote from her keynote from Medicine 2.0 2011 kicked off the presentation.

    • Susannah Fox says:

      Colleen’s slides are definitely worth a look if you are interested in both the theory & practice of creating & nurturing online communities.

      And thanks for the quote from my keynote last year. I remember looking out at the audience and seeing all the e-patients in the front rows — gave me strength to say what I know is true, with the conviction of the many people who have contributed to my understanding of this field, including you.

  7. Many thanks for this speedy-turn-around fantastic summary.
    I tuned into tweets – which certainly captured the energy and sense of content – but my hungry mind welcomed more than 140.
    Thanks again
    ps:trust you saw the early on tweet with the recipe for guaranteed RTs – quote @SusannahFox :)
    Kathy

    • Susannah Fox says:

      As I wrote to Lisa Field (@PracticalWisdom) earlier today, I sat down at my desk at 10am and didn’t look up until 1pm — the hours flew by as I remembered people and conversations. And yet so many insights went by uncaptured! Hopefully more people will share outside of Twitter, which scrolls away so quickly after a conference ends.

      I did see Lisa Gualtieri’s nice tweet. The timing was right this year for me to have fresh data to share. The first Pew Internet/California HealthCare Foundation report based on our 2012 survey will (hopefully) be out in 3 weeks — on mobile health.

  8. Dan Hoch says:

    Susannah, you have an unbelievable memory for detail. I’m impressed. Thanks for reminding me about so much of yesterday’s action.
    As far as highlights from today are concerned, I have to mention this morning’s keynote by John Brownstein who described some amazing projects in health and disease surveillance like HealthMap. Central to his work is the use of “non traditional” data streams.
    Their group has also developed awesome mobile apps like Medwatcher . I downloaded the android version while he was talking. Of course there is also a version for that other platform available on iTunes.

  9. BTW, one thing I didn’t twit but iPhone it was this phenomenal presentation by Cassie on design: http://socialtechnologiesresearch.com/?p=436&preview=true

  10. Matthew Holt says:

    I just want to know if you were out drinking with Alex and Antonio how the hell you even got out of bed to go!

  11. David says:

    I work for http://www.openmhealth.org and this is my personal opinion.

    Susannah, it was great to see you at Medicine 2.0 this past weekend. I appreciate your question and wasn’t able to jump in about mobile health adoption being stagnant over the last few years based on your new research. I want to respond.

    I wrote a post a few months back about the need to scale things down before scaling things up (http://davidhhaddad.com/post/21149532166/scale-down-scale-up). I think the reason the rate of change for mHealth app adoption has been largely stagnant has to do with the issue of making these applications meaningful for one person. Today, many applications need a Facebook-like amount of users to get the inferences necessary to give users better decision support. We are obviously not even close to being there yet. We boast in this space when an app gets 100,000 users.

    Also, many applications are unable to integrate the data necessary to tell my complete health story. If I’m Type 1 diabetic, I don’t need an app that just monitors my glucose levels. I need an app that’ll integrate my glucose, activity, and carbohydrate/weight data and view it all in one place (think mint.com–btw bodytrack.org is doing something simliar). There is never going to be a killer app, but with more foundational elements in the ecosystem (like an open architecture through Open mHealth) we can get closer to providing a data-driven views and storie a person needs and deserves to improve their health. Once we (health innovators) build critical mass around this and make these apps meaningful for just one person, then we can scale to the rest of the country and world.

  12. Jackie Bender says:

    Thanks Susannah for your speedy and detailed synthesis of day 1 at Med 2.0 in Boston. It was wonderful to see you in person again.

    You raise an excellent point about the crowd-sourcing potential of the web for patient reviews of drugs and treatments. Research I’ve conducted with breast cancer survivors indicates that they use online communities predominantly just before, during and after treatment to learn about others’ treatment-related decisions, experiences and strategies to cope with side effects. But this information is embedded within the communities. Perhaps a site dedicated to patients reviews of drugs/ treatments would be more accessible. I also believe there would be demand, and research/practice benefits for patient reviews of health programs and services. Patientslikeme is certainly setting the trend for data sharing and querying across treatments.

    BTW another conference highlight was Lisa Gualtieri’s presentation on Day 2 which demonstrated that mobile apps are typically used once or twice then abandoned… important considerations for the design and sustainability of mobile health solutions.

    Looking forward to the full report of the 2012 Pew survey of mhealth users!

  13. Susannah, it was great to have you at Medicine 2.0 again – thanks for this nice summary and I look forward to see you at Medicine 2.0’13 in London.
    And it seems the little prank I played on John Lester in Second Life will haunt me for some time! But that’s ok … :)

  14. Susannah Fox says:

    Everyone: thanks to a tweet by @MedPedsDoctor (aka Alex Djuricich MD) I found this blog summarizing other presentations from Medicine 2.0:

    http://ajkdblog.org/tag/medicine2conference/

    If you see others, please post!

    And here’s a summary of our West Coast “rival” event, Quantified Self 2012:

    http://sachachua.com/blog/p/23723/

  15. Megan Ranney says:

    Susannah, on behalf of those of us that missed the first day but attended the 2nd day – thanks for this excellent summary. As a physician who believes in the necessity of improving patient engagement (particularly for the underserved), I can’t tell you (& the Med 2.0 organizing committee!) how invigorating it was to meet others working toward the same goal. I came away with more motivation, determination, and new ideas than I’ve had in a while.

    I obviously missed the PatientsLikeMe presentation, but wonder about adding “alternatives” to Sally Okun’s list?

    Also – for those interested in our presentation on the role of technology in improving emergency department patients’ experience/health – we’ve posted our slides on slideshare: slidesha.re/Ui0snB

    Thanks again for posting this. And thanks to all of you for your work. Thoroughly inspiring.

  16. David Harlow says:

    Thanks for hosting this conversation, Susannah. Nice to see you again in Boston. Here’s my 2c: (1) A slidecast of my presentation on data privacy and security, which includes a discussion of the blue, green and rainbow buttons described on this blog and elsewhere: http://j.mp/UkWfzs (2) My own wrapup of Day One (Day Two to follow): http://j.mp/UkWwT9 — including my observation that one of the key memes of the panel you were on (and, really, of the conference) was the range of perspectives on how providers can elicit patient stories, and how patients can best share stories in a way that is ultimately helpful to others; and (3) HealthCamp Boston recaps (from the unconference that preceded Medicine 2.0): http://j.mp/UkWFWD

  17. Rick Coppens says:

    I have a problem reading about how admired PatientsLikeMe are. While their innovative side can’t be questioned, their profit model of selling patient data to pharma companies for marketing purposes still turns my stomach and many others in Europe. Give some of us health researchers 1 million USD per community as PatientsLikeMe gets in some cases, and see the innovative results we could come up with.

    Want to see an online community that is truly patient and family focused with limited resources? Look at projects like Guia Metabolica: http://www.guiametabolica.org/

    I have no affiliation with that project, but admire what they can do with limited resources.

    • Susannah Fox says:

      Welcome, Rick!

      One of the best aspects of the Medicine 2.0 community is that it is international, so we can all benefit from the very different perspectives that come from various regions, governments, economic models, etc.

      In that way, it is similar to experiences I’ve had attending meetings in Europe. For example, after Health 2.0 Paris I wrote this post:

      http://e-patients.net/archives/2010/04/health-2-0-europe-a-moveable-feast.html

      One quote:

      “But before we go farther, let’s make sure we are aware that by choosing narrative, by choosing data, by choosing open sharing or by choosing closed systems, we are evolving in certain directions.”

      So yes, by choosing to commercialize the data that patients and caregivers put in to the PatientsLikeMe system, they are evolving in a certain direction. I see how that could be jarring to people who don’t come from a culture like the U.S. where money is so tied up in health care.

      One inadvertently hilarious moment at Health 2.0 Paris happened when an American entrepreneur was demonstrating his health website and a racy, distracting ad popped up in the sidebar. Europeans around me laughed in horror.

      Later in the program we heard from a Danish health minister who described their patient-centered system, which included a well-designed EMR and patient portal. It was extraordinary and I admit to being envious of that country’s approach.

      People might be interested to read Michael Millenson’s perspective:

      How American Independence Created a New Kind of Patient
      http://e-patients.net/archives/2012/07/how-american-independence-created-a-new-kind-of-patient.html

      There are some amazing patient communities out there using cheap or free technology. They deserve equal admiration for their scrappy, low-budget accomplishments.

      I’ve written extensively about examples of these pioneer communities, like ACOR and Braintalk. See, for example, the insights I gained from fieldwork in rare disease communities:

      Peer-to-peer Healthcare
      http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx

      But wouldn’t you agree that to take discovery to the next level, you need to invest in programmers, designers, infrastructure, etc? What if patients had tools as beautiful and useful as any pharmaceutical researcher? If governments cannot or do not invest, who will pay?

  18. Rick Coppens says:

    Hi Susannah,
    Thanks for your well thought out response. I appreciate having this discussion with you.

    You quote…
    “But before we go farther, let’s make sure we are aware that by choosing narrative, by choosing data, by choosing open sharing or by choosing closed systems, we are evolving in certain directions.”

    -I believe PatientsLikeMe evolves in a direction that exploits patients into thinking that sharing their personal medical information will result in “faster cures” Can anyone give me any examples of that?
    People in the marketing departments of pharmaceutical companies are getting reports from patient data from PatientsLikeMe. I don’t believe the research and development teams of pharma companies are actually using or even looking at this data. If I’m way off here, I would appreciate evidence to the contrary.

    You say…
    “There are some amazing patient communities out there using cheap or free technology. They deserve equal admiration for their scrappy, low-budget accomplishments.”

    -This is very true of your work, and I’d like to see more of these scrappy, low budget, patient led initiatives present at conferences like Med 2.0. Please use your voice and influence to include their voices, so you don’t have to sit through Jamie Heywood’s 31st presentation.

    Finally, to share my views on your questions.

    But wouldn’t you agree that to take discovery to the next level, you need to invest in programmers, designers, infrastructure, etc?
    -Yes, and sadly it is mostly the pharma companies investing in these technologies to reach their own aims. I’d like to see more public funding from the EU put into these programs, and less on bureaucrat for life salaries.

    What if patients had tools as beautiful and useful as any pharmaceutical researcher?
    -We will get there, but not if groups like PatientsLikeMe dominate the market and squeeze out the little guys.

    If governments cannot or do not invest, who will pay?
    -If I find an answer to that, I’ll let you know. Perhaps its less a question of paying, and more a question of harnessing the power of the group (rare disease patients for example) and getting academic researchers to contribute their efforts to spurn innovation.

    Thanks for reading, be well.

    • Dave Clifford says:

      From my biased perspective as someone both involved in research funding and someone involved at PLM, one persistent challenge of research funding v. capital, is that research funding requires less of a “then-what” rationalization than a business plan does. At the beginning of a grant there’s a requirement for an investigator to say “Here’s how I’ll sustain this after the grant period” but there’s rarely an obligation to do so to anyone, whether it’s the funder, the patient population, or the cohort of other researchers.

      The PLM approach brings a different level of scrutiny to sustainability. There’s a continuing question of how PLM will be relevant to others in the marketplace and that’s asked on an ongoing basis, not once every four or five years.

      I wouldn’t think of PLM in particular as trying to “squeeze anyone out.”

      But I think sure, more funding is great overall.

      • Susannah Fox says:

        Thanks to both of you for continuing the thread.

        I was also struck by a perception that PLM is squeezing anyone out. I have seen the opposite: public sector experts discussing how they would like to duplicate PLM but not use PLM in their projects. In other words, PLM is a market leader (creator?) and others are following, not being shoved aside.

    • Susannah Fox says:

      Thanks also for joining the call for more patient voices at conferences. You might be interested in Lucien Engelen’s “Patients Included” initiative.

      Here’s one article explaining his point of view:
      http://medicinex.stanford.edu/2012/06/19/patients-included-lucien-engelen-on-healthcares-least-used-resource/

      Here’s another:
      http://www.tedxmaastricht.nl/2012/01/patients-included/

  19. I don’t think patientslikeme or any org should be measured on their impact, not biz model. Some NGOs very inefficient/ineffective & some for-profits are hyper-efficient. If an org is selling data, I think the level of scrutiny goes up and should. If they fail in their care of data, they can and will fail.

  20. [...] and ‘posting population’ and patients as ‘listening population’. She left us to ponder the question: can you imagine the body of knowledge we could gather if we harnessed the data from these [...]

  21. Hello!

    I wanted to say I thank you for all the work you are doing. It is going to help out mHealth and the development of the concept overall in healthcare. This was my first attendance at the Medicine 2.0 conference, and it really was an enjoyable experience. Never, did I think I would play the role of reporter/pharmacist in my career, but I guess anything can happen.

    I am perpetually perplexed over at iMedicalapps with the utilization of apps in healthcare and the research being accomplished in the field. Really, is the use of mobile apps helping at all? Do patients use these apps, play around with them, and then discard them when they do not see any outcomes?

    Integration of apps into healthcare I am excited to see. The VA panel of their development of apps was great to see how they want to use apps to gather patient data and utilize in their EHR to make medical interventions. I think they may be a big player in data collection demonstrating outcome associated with the logistical benefit of utilizing apps in the community/outpatient setting to update their providers on their health status (eg. BP, HR, weight, etc.)

    Included, as a pharmacist, I really hope to see the ability to keep pharmacists and physicians updated on the toleration of newly prescribed medications, and ultimately, if we can increase adherence. I did not see any research at the conference demonstrating that, but I hope that comes up in the next one or data will be available to give us a direction.

    What do you hope to see in the future? What do you think pharmacists can accomplish in mHealth research?

    Thank you again,
    Tim @ imedicalapps.com

    • Susannah Fox says:

      Hi Tim,

      Great questions, which I’d love to open up to a larger group since I don’t have the answers to most of them.

      What I can offer is data. Here’s what we know about the U.S. based on national surveys conducted by me & my colleagues at the Pew Internet Project:

      In general:
      • 85% of U.S. adults own a cell phone
      • 43% of cell phone owners have downloaded an app of any kind
      • 54% of app users have decided to not install a cell phone app when they discovered how much personal information they would need to share in order to use it
      • 30% of app users have uninstalled an app that was already on their cell phone because they learned it was collecting personal information that they didn’t wish to share

      Specific to health:
      • 11% of cell phone owners have a health app on their phone (statistically the same as measured in 2011, 2010)
      • Most popular categories include exercise/fitness, diet/food, and weight. A few people mentioned Rx-related apps, including specific shout-outs to Walgreens.

      Your last question (what can pharmacists accomplish) is probably best answered by exploring your first question (is the use of mobile apps helping at all).

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