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The Magic of Community

Posted on May 9, 2015 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Today was the final day of the Healthcare IT Marketing and PR Conference (HITMC) which I organize. The event is a lot of work, but the community that it’s created is absolutely golden. I really happened upon a unique community that had never been brought together before. Before this conference, healthcare marketing and PR professionals really didn’t have a place to go and learn and connect with people doing the same work they do. As Brian Mack mentioned at the end of the conference “This is the first conference where I didn’t have to explain to people what I did for work.” Someone else commented on how every person they talked to at the conference was someone who spoke their same language.

There’s really something magical about growing a community of like minded individuals. There’s value in expanding your horizons and hearing people from outside of your niche as well. Both can be valuable, but when you’re dealing with challenging problems, it’s great to be able to work with people who have seen those challenges before. That’s something that’s really hard to replace and is golden when you find it.

I think that’s why in healthcare websites like PatientsLikeMe have been so successful. Last year one of the HITMC attendees described his experience like “finally finding his tribe.” Patients have that same need. For example, my wife has hashimoto’s and whenever she meets someone who has the same issue, there’s an instant bond of shared experience. It’s a beautiful thing.

What’s going to be interesting as healthcare evolves is what new online healthcare communities will come to be. Will hospitals create communities for their patients? Will primary care doctors in an area create a community of users interested in being healthy? Will an ACO require these types of healthy communities?

Don’t underestimate the power of bringing together people facing similar challenges. There’s a magic in community that’s really special. Back to the HITMC community, I feel lucky to be part of such a caring group of individuals who really want to improve healthcare.

Not So Open: Redefining Goals for Sharing Health Data in Research

Posted on June 24, 2014 I Written By

The following is a guest blog post by Andy Oram, writer and editor at O’Reilly Media.

One couldn’t come away with more enthusiasm for open data than at this month’s Health Datapalooza, the largest conference focused on using data in health care. The whole 2000-strong conference unfolds from the simple concept that releasing data publicly can lead to wonderful things, like discovering new cancer drugs or intervening with patients before they have to go to the emergency room.

But look more closely at the health care field, and open data is far from the norm. The demonstrated benefits of open data sets in other fields–they permit innovation from any corner and are easy to combine or “mash up” to uncover new relationships–may turn into risks in health care. There may be better ways to share data.

Let’s momentarily leave the heady atmosphere of the Datapalooza and take a subway a few stops downtown to the Health Privacy Summit, where fine points of patient consent, deidentification, and the data map of health information exchange were discussed the following day. Participants here agree that highly sensitive information is traveling far and wide for marketing purposes, and perhaps even for more nefarious uses to uncover patient secrets and discriminate against them.

In addition to outright breaches–which seem to be reported at least once a week now, and can involve thousands of patients in one fell swoop–data is shared in many ways that arguably should be up to patients to decide. It flows from hospitals, doctors, and pharmacies to health information exchanges, researchers in both academia and business, marketers, and others.

Debate has raged for years between those who trust deidentification and those who claim that reidentification is too easy. This is not an arcane technicality–the whole industry of analytics represented at the Datapalooza rests on the result. Those who defend deidentification tend to be researchers in health care and the institutions who use their results. In contrast, many computer scientists outside the health care field cite instances where people have been reidentified, usually by combining data from various public sources.

Latanya Sweeney of Harvard and MIT, who won a privacy award this year at the summit, can be credited both with a historic reidentification of the records of Massachusetts Governor William Weld in 1997 and a more recent exposé of state practices. The first research led to the current HIPAA regime for deidentification, while the second showed that states had not learned the lessons of anonymization. No successful reidentifications have been reported against data sets that use recommended deidentification techniques.

I am somewhat perplexed by the disagreement, but have concluded that it cannot be resolved on technical grounds. Those who look at the current state of reidentification are satisfied that health data can be secured. Those who look toward an unspecified future with improved algorithms find reasons to worry. In a summit lunchtime keynote, Adam Tanner reported his own efforts as a non-expert to identify people online–a fascinating and sometimes amusing tale he has written up in a new book, What Stays in Vegas. So deidentification is like encryption–we all use encryption even though we expect that future computers will be able to break current techniques.

But another approach has flown up from the ashes of the “privacy is dead” nay-sayers: regulating the use of data instead of its collection and dissemination. This has been around for years, most recently in a federal PCAST report on big data privacy. One of the authors of that report, Craig Mundie of Microsoft, also published an article with that argument in the March/April issue of Foreign Affairs.

A simple application of this doctrine in health care is the Genetic Information Nondiscrimination Act of 2008. A more nuanced interpretation of the doctrine could let each individual determine who gets to use his or her data, and for what purpose.

Several proposals have been aired to make it easier for patients to grant blanket permission for certain data uses, one proposal being “patient privacy bundles” in a recent report commissioned by AHRQ. Many people look forward to economies of data, where patients can make money by selling data (how much is my blood pressure reading worth to you)?

Medyear treats personal health data like Twitter feeds, letting you control the dissemination of individual data fields through hash tags. You could choose to share certain data with your family, some with your professional care team, and some with members of your patient advocacy network. This offers an alternative to using services such as PatientsLikeMe, which use participants’ data behind the scenes.

Open data can be simulated by semi-open data sets that researchers can use under license, as with the Genetic Association Information Network that controls the Database of Genotypes and Phenotypes (dbGaP). Many CMS data sets are actually not totally open, but require a license to use.

And many data owners create relationships with third-party developers that allow them access to data. Thus, the More Disruption Please program run by athenahealth allows third-party developers to write apps accessing patient data through an API, once the developers sign a nondisclosure agreement and a Code of Conduct promising to use the data for legitimate purposes and respect privacy. These apps can then be offered to athenahealth’s clinician clients to extend the system’s capabilities.

Some speakers went even farther at the Datapalooza, asking whether raw data needs to be shared at all. Adriana Lukas of London Quantified Self and Stephen Friend of Sage Bionetworks suggested that patients hold on to all their data and share just “meanings” or “methods” they’ve found useful. The future of health analytics, it seems to me, will use relatively few open data sets, and lots of data obtained through patient consent or under license.

A Yelp for Medical Treatment

Posted on January 16, 2014 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

There’s a great new Las Vegas Startup company, HealClick, that is launching a yelp like service for medical treatments. They’ve launched a $50,000 Indiegogo campaign to raise money for their company. Check out that page for more info and a video of what they’re working on.

I love the concept of a Yelp for medical treatments. Certainly we see some of this happening already on websites like PatientsLikeMe and other communities. However, I love that HealClick is trying to create a more specific connection between a patient’s symptoms and treatments with those with similar experiences. In most of the existing patient communities you have to already know that you’re a diabetic or have lupus. From what I understand, the goal of HealClick is to help someone who hasn’t completely identified their health issues connect with other people with similar symptoms.

Plus, they’re focusing on complex immune-related illnesses that have overlapping symptoms and often no clear medical treatment. The ability to find and compare treatment options is very interesting. In these situations the patient is extremely motivated to find every option possible and the doctor just doesn’t have time.

Certainly this could open a pandora’s box where the rogue patient starts thinking they can treat themselves. However, from my experience that isn’t what happens or those patients would react this way regardless of what tools they use. More common is patients become informed of something new and then they consult with their doctor on the options they found.

Turns out, this is the shift that’s happening across all of medicine and not just chronic diseases. The patient is becoming more involved and more informed. Hopefully HealClick can provide some structure to how a patient learns about their health issues.

PatientsLikeMe Social Network Refutes Published Clinical Trial

Posted on April 27, 2011 I Written By

Here is the actual press release from PatientsLikeMe:

Nature Biotechnology Paper Details Breakthrough in Real World Outcomes Measurement

CAMBRIDGE, Mass., April 25, 2011

Today, PatientsLikeMe reveals the results of a patient-initiated observational study refuting a 2008(1) published study that claimed lithium carbonate could slow the progression of the neurodegenerative disease, amyotrophic lateral sclerosis (ALS). PatientsLikeMe, a health data-sharing website with more than 100,000 patients and 500+ conditions, announces its study results in the journal, Nature Biotechnology.

“This is the first time a social network has been used to evaluate a treatment in a patient population in real time,” says ALS pioneer and PatientsLikeMe Co-Founder Jamie Heywood. “While not a replacement for the gold standard double blind clinical trial, our platform can provide supplementary data to support effective decision-making in medicine and discovery. Patients win when reliable data is made available, sooner.”

After the original claim was published by the Proceedings of the National Academy of Sciences, 348 ALS patient members reported their off label use of lithium on PatientsLikeMe. Just 9 months later at the International ALS/MND Symposium, PatientsLikeMe presented preliminary results that lithium was not having an observable effect on the disease progression of these patients. The results were revealed before any of the formal follow up trials enrolled patients.

PatientsLikeMe developed a novel algorithm designed to match patients who reported taking lithium with a number of other ALS patients that had similar disease courses. By using a matched control group, PatientsLikeMe was able to reduce biases associated with evaluating the effects of treatments in open label, real world situations and improve the statistical power of the study making each patients contribution more meaningful.

Heywood adds, “The rising costs of healthcare and increasing complexity of managing disease require new approaches to comparative effectiveness research and real time management of disease. While there is much work to do, we have demonstrated a patient-centric approach that provides dramatic cost and time advantages.”

Nature Biotechnology has made the final publication, titled, “Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm,” available for free to the public on its website (DOI: 10.1038/nbt.1837).

(1) (Fornai et al., “Lithium delays progression of amyotrophic lateral sclerosis.”
Proc Natl Acad Sci U S A. 2008 Feb 12;105(6):2052-7.)

About PatientsLikeMe

PatientsLikeMe® ( is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments.

We are all aware of the power of social networking in numerous arenas, but this is taking it to a whole new level.  Smart businesses are now understanding the power of social networking.  I have participated in all kinds of surveys and focus groups but social networking provides an unfettered opinion from the people that are actually using products.  People write exactly what they are thinking without any consideration of what a company wants to hear.

Healthcare companies would be stupid not to take advantage of this free information.  Like they said in the press release, this is not a replacement for true clinical trials, but it does provide worthwhile supplementary data for people to consider.  As a regular person, the information from a clinical trial can be as easy to understand as a foreign language, but being able to read exactly what other people are saying can help you understand the information.  Why do you think company review sites are so successful?