PharmaWall is the answer to “But I can’t post on Facebook.”

Bunny Ellerin — Mon, 05 Dec 2011 15:59:21 +0000

I had been noticing ads for something called PharmaWall on a few of the health media sites I frequent and decided to find out what it was. As I began my search, I discovered that it was created by Intouch Solutions, a digital marketing agency focused on pharma that is also home to #hcsm luminary Wendy Blackburn.

PharmaWall is a Facebook monitoring and moderation tool. It’s the answer to, “But we can’t use Facebook. What happens when all the adverse events come in? And what about all those comments we can’t turn off any more. How do we handle that?” PharmaWall allows pharma companies to minimize risk while still engaging in the conversation. Alerts are built into PharmaWall to notify administrators of new posts and comments to the Facebook page. Administrators review the user-generated content and then accept, revise or decline it before it appears on Facebook. The system keeps detailed records of both the content and the approval decisions for further review or auditing purposes. Sanofi, once the target of negative Facebook postings, is a PharmaWall client using it on their Diabetes Discussions wall.

When I spoke to Wendy about PharmaWall, she told me that it was actually an extension of another home-grown solution for clients called Share, Send, Save, a widget that allows pharma-approved content sharing across channels. If you’d like to speak to Wendy further, reach her on Twitter, of course, or via email: wendy.blackburn@intouchsol.com.

Kudos to Intouch. Rather than simply commiserate with clients, they took a look at the dilemmas facing pharma when trying to engage and created tools to solve the issues. It is rare to find an agency that will put their own resources behind such endeavors.

EndoGoddess, the mobile app

Bunny Ellerin — Thu, 29 Sep 2011 16:50:45 +0000

Dr. Jennifer Dyer is no ordinary physician, she is an mHealth pioneer and social media expert known to her legion of Twitter followers as EndoGoddess. Last year I interviewed Dr. Dyer for my white paper on The Social Physician. At the time she was practicing pediatric endocrinology at Nationwide Children’s Hospital in Columbus, OH. During our discussion, she mentioned a pilot texting reminder program she had launched for her teen patients. She was delighted that there was an improvement in medication adherence and reduction in A1C levels over a three-month period. She was eager to implement the program with a wider audience.

Fast forward several months. The “aha” moment that she could actually bring her diabetes app to life came during last March’s South by Southwest (SXSW) conference in Austin. After appearing on a health panel, she was surrounded by investors and companies interested in discussing how to commercialize or license the tool. Until then she had not been convinced that there was a market for the mobile app, but the reception at SXSW opened her eyes to the possibilities. Concurrently she had observed that some of the initial gains her patients made began to disappear. The researcher in her hypothesized that the teens needed more than reminders to succeed.

Filled with enthusiasm from SXSW and recognizing there was more work to do, Dr. Dyer decided to leave full-time practice to devote all her energy to building out EndoGoddess, the diabetes app. As she pointed out, “This is a really big opportunity to make a difference in healthcare. Everyone has a phone, and it is great way to streamline medical care.” Another motivator was her belief that doctors must be part of the process. “So many patient tools are developed in isolation, with no physician input. Unless the tools work for both patients and doctors, they are doomed to fail,” she told me.

Dr. Dyer teamed up with Duet Health, an Ohio-based mobile health developer, to complete development of the app. She integrated BJ Fogg’s behavior change model into the design to address the regression she saw among her initial testers. According to the model: Three elements must converge at the same moment for a behavior to occur: Motivation, Ability, and Trigger. When a behavior does not occur, at least one of those three elements is missing. Dr. Dyer realized that her initial app had a trigger (the reminders) but lacked the other two elements.

Dr. Dyer and the team at Duet Health worked diligently to refine EndoGoddess, the mobile app, and launched it publicly on September 21st in the iTunes store. It sells for $.99. The app contains all three elements cited by BJ Fogg for the targeted behavior of checking blood glucose levels 4 times per day.
• Motivation comes from iTunes rewards on a weekly basis so that the user can download a song
• Education comes from the multimedia content within the app related to diabetes
• Triggers come from the app’s daily inspiring messages taken from the diabetes online community as well as medication reminders or alarms that each user designates

EndoGoddess the app may be live but it is still very much a work in progress, according to Dr. Dyer. She is already updating it with new features and is eager for user feedback.

There are many ways to keep tabs on Dr. Dyer and her progress with EndoGoddess, her blog and Twitter being two excellent sources. She will also be speaking at Mayo Clinic’s Annual Health Care Social Media Summit in October, BlogWorld in November and the mHealth Summit in Washington, DC in December.

You can also reach her through plain old email at drjenshinedyer@gmail.com.

Diabetes innovation challenge – deadline is July 31st

Bunny Ellerin — Tue, 19 Jul 2011 17:17:49 +0000

Following on my last post about citizen science, which relied on members of TuDiabetes for data collection, I just learned that Manny Hernandez, founder of the diabetes social network, is one of seven judges of a consumer-focused design competition sponsored by sanofi-aventis: Data, Design, Diabetes. Innovators have until July 31st to submit their concepts on the Data, Design, Diabetes site. Five semi-finalists will win $20,000; two finalists will receive an additional $10,000; the winner will be awarded $100,000 and a one-month stay at the RockHealth seed incubator for health start-ups in San Francisco.

As noted in the criteria, the Innovation Challenge is ”not looking for the cleverest idea, the best eye-candy, the most bleeding-edge technology. We are looking for a solution that brings together the strength of insight enabled by open data sets and the empathetic connection provided through human-centered design to meaningfully help people living with diabetes in the US.” So there!

Among the requirements, the technology should:

Meet the unique needs of people living with diabetes in a way that is differentiated from other solutions in the marketplace
Bring relief, delight, satisfaction, hopefulness to people living with diabetes.
Consider utility and the emotional and behavioral aspects of the disease.
Be able to scale.
Incorporate of the insight afforded by open data sets. Concepts must consult or make use of open data sets found on healthdata.gov
Be capable of being developed into a prototype with 4-6 weeks.

Clearly Sanofi knows who’s who in the tech, social and venture communities. In addition to Manny, they enlisted an impressive panel of judges:

Jeff Hammerbacher – Founder and Chief Scientist, Cloudera
Hilary Mason – Chief Scientist, Bit.ly
Todd Park – CTO, U.S. Department of Health and Human Services
Sue Siegel – General Partner, MDV-Mohr Davidow Ventures
Ida Sim – Director, UCSF Center for Clinical and Translational Informatics
Dennis Urbaniak – VP U.S. Diabetes, sanofi-aventis

For more updates, follow Data Design Diabetes on Twitter and Facebook.

Social networks advance citizen science

Bunny Ellerin — Wed, 29 Jun 2011 20:04:02 +0000

Social media networks focused on health conditions are now test sites for clinical research. Physicians at Harvard Medical School, the Harvard-MIT Division of Health Sciences and Technology and Children’s Hospital of Boston embarked on a study to assess whether registered users of TuDiabetes, a social network for individuals with diabetes, would willingly share personal data to contribute to a public health study on glycemic control. In short: YES.

Of the 6500 active members of the site (at the time the study was conducted in May 2010), 17% voluntarily entered their A1c values into a program designed for the study called TuAnalyze. Within the participating population, 81% opted to share that data for inclusion in charts, graphs and maps on the site. Over one-third also listed their personal A1c data on their profile page.

The authors tested this “low-cost and scalable model of citizen science” and concluded that the results were compelling. “The TuAnalyze model, which provides for patient reporting and aggregate feedback on a flexible time schedule could provide a boon to public health and research and complement these other approaches.” The full article is called Sharing Data for Public Health Research by Members of International Online Diabetes Social Network can be found on PLoS ONE.

It’s not surprising to me that people who are interested enough to join a social network (outside Facebook) that focuses solely on their condition would contribute to a study that advances care. What puzzles me is why more researchers are not taking advantage of this population.

One-third of Americans are health illiterate

Bunny Ellerin — Mon, 16 May 2011 22:06:04 +0000

I came across a story on the low level of health literacy in Fierce Healthcare, which it had summarized from the Washington Post. It continues to trouble me. The Post reported on a 2006 study conducted by the U.S. Department of Education that found 36 percent of adults to have a basic or below-basic understanding of health material. According to the excerpt, “90 million Americans understand health information at a fifth-grade level or lower. And just over half have intermediate comprehension.”

What is health literacy? According to HSS (U.S. Dept. of Health and Human Services), “Health literacy is the ability to understand health information and to use that information to make good decisions about your health and medical care… Limited health literacy can affect your ability to:

Fill out complex forms
Locate providers and services
Share personal information such as health history
Take care of yourself
Manage a chronic disease
Understand how to take medicines

Yet we know that health information is among the most queried topics on the Web. We also know from recent studies that not all health information is good information. Recently, a team of physicians at Harvard Medical School evaluated the quality/safety of 10 diabetes social networks on 28 indicators and published the results in the Journal of the American Informatics Association. In their paper, Social but Safe? Quality and Safety of Diabetes-related Online Social Networks, they found that the quality of information was variable on many levels. For example:

Only half were in sync with diabetes science/clinical practice recommendations
70% lacked medical disclaimer use
Misinformation about a diabetes ‘cure’ was found on four moderated sites
Of nine sites with advertising, ads for unfounded ‘cures’ appeared on three

Recall from the BUPA Health Pulse study I wrote about in March that only a small percentage (less than 25%) of health seekers bother to verify the information they find online.

We live in a time where we have rapid, nearly unlimited, access to health information. Yet we also live in a time where over one-third of the population is considered health illiterate and even fewer check the veracity of information they find on the Web. Therefore, it seems to me, that we have a large number of people who might not understand how to manage their disease and a lot of poor/unsubstantiated information on the Internet waiting to prey on that. We have created yet one more problem to solve in our healthcare system. I don’t have the answer, but would love to hear thoughts from my readers and others who care about this topic.

Yes! Pharma can Engage in Social Media – A Case Study

Bunny Ellerin — Thu, 05 May 2011 21:47:07 +0000

I am often asked for examples of how pharma can engage in social media today. Let’s just gloss over the industry’s general reluctance to do so and the refrain about lack of FDA guidance. Where there’s a will, there’s a way, and that is why I’d like to commend EMD Serono. I stumbled a semi-social site they funded called How I Fight MS. It provides a nice example of both engaging patient opinion leaders and integrating social tools. The site features five MS bloggers, each with his/her own story to share through writing, video, photos, and music. I was intrigued because one of the five bloggers is Lisa Emrich, well known in the MS community through her blog Brass and Ivory and someone I have interviewed before on this blog. (2009, Activated Patients and Why Pharma Should Care)

Lisa was nice enough to talk to me about the her experience working on this site. She was initially approached by EMD Serono’s agency via email with what sounded like an interesting proposition – they wanted to create a site where MS bloggers could gather to discuss living with the disease. Critical to Lisa’s decision to sign on was that the site would be unbranded. While she is passionate about educating others about MS, she is not interested in becoming a spokesperson for a particular drug or treatment. That worked in her favor on this project because one stipulation of participation was that bloggers not discuss drugs or frequency of treatment (which would clearly identify the drug they were on). Another requirement was that all content go through a review process prior to posting. While this slowed the pace of adding new videos or posts, Lisa noted that she was never asked to alter her content in any way. The only thing she noticed on a couple of videos was that a message to “talk to your doctor about symptoms you are experiencing” was added.

The site has limitations and that’s why I call it semi-social. For example, readers are not allowed to leave comments and Lisa is not able to embed the videos she creates for How I Fight MS on her own blog. Still EMD Serono tried something new by using patient bloggers and incorporating social media so let’s give credit where it’s due. Plus, Lisa feels the site has been helpful for patients, particularly those who are newly diagnosed, based on the many personal messages she receives. “Patients and caregivers really appreciate the videos so they can see and hear what living with MS is like. It has helped them come to terms with this new diagnosis and have hope for the future.”

The consequences of poor quality health information can be serious

Bunny Ellerin — Thu, 17 Mar 2011 18:40:21 +0000

Somehow I missed this report Online Health: Untangling the Web, part of the BUPA Health Pulse survey, when it came out earlier this year. I am glad to have found it now because it represents a truly global view of how individuals are using the Internet with respect to their health. The study was funded by BUPA (still not clear what they do but seems like they sell health insurance and run nursing homes) and conducted by the London School of Economics. This is a powerful study in that over 12,000 individuals in 12 countries were surveyed (Australia, Brazil, China, France, Germany, India, Italy, Mexico, Russia, Spain, the UK and the USA) to uncover attitudes and perceptions towards aging, chronic diseases and health and well being. Absolutely download this report and review it.

One of the most important points made in this report is that access to health information is not a universal good. As more data, articles, blogs, social networks, videos and the like proliferate around health, whether on the Web or via mobile, it becomes increasingly hard for most lay people to discern what is credible and what is not. This report asserts that very few people check the quality of the information they are using – fewer than one in four.

“Providing more and better information about health may help empower individuals, but it is a challenge to ensure that online health information is of high quality and can be trusted. Not only is there an ever increasing amount of information available, some of which may be inaccurate and out of date, it can also be difficult to identify the source of website content and if there is a link to commercial activity. The consequences of poor quality information can be serious, as it may lead to needless worry, unnecessary consultations, over-use of health services and/or a delay in appropriate diagnosis.”

Other important points:

Access to information is not universal. There are huge disparities in access to the Internet around the world: in most high income countries, 60% of or more of the population has access (although not all choose to engage); in emerging economies like Mexico, Brazil and Russia, less than 40% typically have access; in India, the figure is 7%.

Of those with Internet access, there is strong demand for health and medical information. In every country represented in the survey, at least 60% of individuals search for information on drugs, general health issues or specific conditions. Respondents in all five emerging market countries – Brazil, China, India, Mexico and Russia – were among the most avid health information seekers (using the Internet Often according to the survey, graph to the left). One possible explanation could be the high cost of medical care in these regions.

What are people searching for? Primarily drug info (68%) followed by questions around what ails them (self-diagnosis at 46%). This is followed by reading about other patients’ experiences (39%), information on hospitals/clinics (38%) and information on doctors (25%).

There have been few economic analyses of the potential savings that improved access to quality health information can bring. One exception is a study conducted by NHS Choices in the UK, a government-run health portal. (I think the NHS content and tools are really good). They reported savings of£44 million as a result of a decrease in the use of GP consultations by 37 per cent of the website’s users.

There is no question that access to health and medical information is important. The big issue going forward will be how we determine quality and disseminate that assessment to health content seekers. As noted in the report, “The consequences of poor quality health information can be serious.”

HealthCamp San Diego

Bunny Ellerin — Tue, 08 Mar 2011 16:50:44 +0000

Before it’s too late, I wanted to post a plug for the upcoming HealthCamp San Diego 2011. The event will take place on Sunday, March 20th at the Rady School of Management on the beautiful campus of UC San Diego. Health tech guru and maven Gregg Masters, known to many as @2healthguru, is one of its founders and refers to the confab as “healthcamp by the sea” since the Rady School of Management campus overlooks the Pacific Ocean from atop the bluffs of scenic Torrey Pines. This second San Diego HealthCamp has coordinated its timing with that of Health 2.0 Spring Fling, to be held on March 22nd and 23rd at the Hilton La Jolla Torrey Pines.

Gregg tweeted to me, “Un-conference phenomon is gaining traction as a unique granular innovation medium.” The idea revolves around collaboration and UGC (user generated content) vs. traditional agenda-already-set/take-it-or-leave-it programming. All those attending have a chance to suggest and run sessions during the day. At an un-conference, as described on the HCSD site, “All sessions are participant generated, with many tethered either direct or indirectly to how interactive digital or social media, open source and the best of the Internet, whether mobile (mHealth) web, or process innovation can enable better health(care) outcomes (i.e., better care, increased access or reduced cost). The sessions convened will range from the formal, i.e., a planned multimedia presentation reflecting years of research and practice, to the informal and spur of the moment ‘new idea’ that would be fun to talk about.”

The cost to participate is minimal – $25 for most, $5 for students. Register here. Have a great un-conference!

Doctors 2.0 Conference coming to Paris in June

Bunny Ellerin — Wed, 16 Feb 2011 18:26:16 +0000

Paris in June. Who wouldn’t want to be there? And now there is an important professional reason to take a trip – Doctors 2.0 & You, a first-time conference that will examine how physicians are actually using the many tools now available on the Web and via mobile. The conference will take place on June 22nd and 23rd at the Cité Universitaire Internationale in Paris. Denise Silber, the organizer, is someone I have known for about a decade (we are both alumna of a certain crimson business school) and one who has been at the forefront of the eHealth movement. Denise is not a newcomer to the space, she has been involved in work related to the Web and its effect on health through her consultancy Basil Strategies for many years.

I spoke to Denise about her aspirations for the forum. It was borne out of a belief (true, in my opinion) that “not enough thought has been given to physicians and whether the tools being created for consumers actually advance the physician/patient dialogue.” In the U.S., in particular, there has been great attention given to consumer tools that seek to empower individuals in making more informed healthcare choices and decisions. Perhaps, Denise suggests, that is because Americans are closer to issues of access to care and the payment side of the equation. Unlike many of their European counterparts, they have to pay for more of the care they receive or often forgo medical attention. Yet, in the end, physicians have to embrace and recommend the tools, too. And, there are many applications being developed just for physicians – are they using them? Which ones do they find essential, and which ones are extraneous?

The line-up of speakers is impressive. Among them is Prof. A.C. Nieuwenhuijzen Kruseman, who is President of the Royal Dutch Medical Association. The Netherlands has been especially active in the area of eHealth and has an entire area of the association’s site is devoted to the topic. The prolific and well-known ScienceRoll physician Bertalan Meskó (@Berci on Twitter) will also be on hand. Another notable speaker will be Dr. Victor M. Montori, a diabetologist and clinical epidemiologist, who is medical director of Mayo Clinic’s Center for Social Media. For the complete list, view the speakers on the conference site.

Wishing Denise and her team a successful conference on this important topic.

My Top 10 Social Media & Technology Resources in Health

Bunny Ellerin — Sun, 02 Jan 2011 12:05:37 +0000

I gave a presentation recently to a group of social media newbies. I thought it would be good to leave them with a list of resources for future reference. It was a great opportunity to think about the sources I turn to when wanting to keep up-to-date on technology’s impact on health and the delivery of healthcare. There are many more excellent online outlets, but these are ones I think are top-of-the-line.

iHealthBeat – This daily newsletter is a publication of the California HealthCare Foundation, although it is really written and edited by The Advisory Board. It covers all things related to the intersection of technology and health. I love it, and find so many useful articles, summaries and stats. Subscribe!
Pew Internet & American Life Project – Susannah Fox is the resident expert on Health at Pew. Her analysis and insights are always first-rate. I read everything she publishes and always turn to Pew for recent data related to social/digital/mobile and health. Follow Susannah on Twitter, too.
Dose of Digital Pharma & Healthcare Social Media Wiki – Jonathan Richman, Director of Social Media at Bridge Worldwide, provides the healthcare industry with one of the most useful resources available in the social health sphere. He has organized the go-to list of patient and professional communities (sponsored and independent); pharma and healthcare pages on Twitter, YouTube and Facebook; blogs from patients, caregivers, industry and observers. And more! Check it out and bookmark it.
CDC’s Health Communicator’s Social Media Toolkit – For those who think that government can’t get it done, think again. I remember seeing Ann Aikin of CDC at a social media event and was so impressed by how well they had integrated social, digital and mobile media into their communications strategies. Now they have documented their hard work and lessons learned in this amazing piece of work. It is a how-to guide on using RSS, podcasts, blogs, video, Twitter, social networking sites, widgets, mobile, ecards, online games…and more. And it’s available to all at no charge.
FDASM -Fabio Gratton, Chief Innovation Officer of Ignite Health, put up this site in late 2009 to help the industry keep up-to-date on the FDA’s Social Media Hearings (Nov 12-13, 2009). He has assembled all of the materials (documents, videos, presentations, interviews, resources) related to the hearings and continues to update it as new information emerges. It’s also a great place to see how crowded the agency space is in health and pharma. Peruse all the logos on the right-hand side of the page.
Social Media University Global – Lee Aase is a name you should know if you’re interested in social, health and doing it right. Lee has attained rock star status within social media circles as the Director of Mayo Clinic Center for Social Media. But that’s just his day job. By night he is the Chancellor of Social Media University Global (SMUG), a site he created to help others navigate the new social order. It is a rich resource that provides practical, hands-on training in social media with “101″ (intro) courses on topics like social networking, blogs, tagging and wikis. He also covers Twitter, Facebook, Flickr and YouTube. Lee has also written his own 35 Social Media Theses. Watch out Martin Luther!
MediGuard – This is my go-to site to find out how patients really feel about the drugs they are taking. The quantitative data about satisfaction, usage and side effects is a good barometer and the verbatims provide excellent context. Anyone can register to use the site.
Fierce Mobile Healthcare – Everyone is talking mobile health. I find this site’s newsletter to be a great way to keep tabs on what’s going on. Fierce Mobile Healthcare is part of the Fierce empire (Fierce Biotech, Fierce Healthcare) and provides a solid round-up of news in the space.
iMedicalApps - This is a physician-led site where practicing doctors provide commentary and reviews of mobile medical technology and applications. For people interested in understanding what is really valuable to a physician (vs. what agencies tell you is valuable), then the site is a must.
e-Patients – A window into the thinking of “equipped, enabled, empowered and engaged” patients. It turned me on to the Society for Participatory Medicine, and I like to read the perspectives of the many contributors.

Happy New Year – let’s make 2011 a great one.