http://togorun.net/blog/2010/07/susannah-fox-on-the-rising-role-of-social-media-in-health/

http://www.resourceshelf.com/2010/07/14/mobile-social-health-at-national-library-of-medicine-nlm-susannah-fox-speaks-two-presentations/

Here is an excerpt:

1) When it comes to consumer health NLM or MedlinePlus or something else (but not NIH) must become a synonym for health info. They must get to the right people and get them talking. This is what another well-known company did, they’re name is Google.

2) Differentiate Between PubMed and MedlinePlus (The Right Tool for the Right Job)

3) Should the NLM seek more placements [did NLM pay for these placements or are we talking organic search] such as these? Should the NLM maintain its own brand or should the National Institutes of Health emerge as the stronger, overall brand?

They should must maintain their own brand.

1) Search results can change at a moments notice.
2) Not everyone uses Google
3) Is their just one book about health in the bookstore?
3) When Yahoo begins using the Bing database that will increase market share for Bing results. How is NLM Preparing?
4) Again, Google should be used as an example on how to reach out and get “influencers” to use the product and tell others about it.

Bottom Line: NLM has to be both a sly marketer and a teacher. Marketing their wonderful products and services and training people why they are better and that they are not hard to use. Of course, this must be done on a limited budget vs. other well-known and commercial health sites.

After performing due diligence on the unmet needs of non-professional health info seekers (some of which is published here http://bit.ly/aM7EGn), Alan Littleford and I spent the next two years devising new ways to clean up and reorganize gov’t consumer health info space. My background is here, http://www.markboguski.net; Dr. Littleford was the co-Founder and Chief Technology Officer of Healthscape, Inc. Prior to this, he held a number of key positions in the IT industry as Principal Architect, Lead Developer or Founder at companies such as Cogent Software, Sitka (a subsidiary of Sun Microsystems), Siebel Systems and Network Associates. Alan has been a consultant for a number of both major companies and technology start-ups in Silicon Valley and elsewhere.

Building on the foundation of the UMLS ontology, we have identified and incorporated nearly 1500 diseases, conditions, medical procedures and other health topics written for consumers from all NIH Institutes and Centers (ICs, excluding NLM). We have also incorporated “package insert” information for the nearly 4300 approved drugs from FDA.gov. All of this content has been automatically organized using our Medical Ontology Engine which identified approximately 71,000 known medical terms and created a network of about 111,000 explicit connections among various medical conditions and their treatments. This network of linked medical knowledge is “self-learning” as it was designed to continuously improve and expand 1) as users interact with the system and 2) as the system ‘digests’ feeds from knowledge sources such as the Public Library of Science (PLOS), ClinicalTrials.gov, GeneTests.org and other high-quality, web-based sources of medical information.

All of this is searchable on our website http://www.ResoundingHealth.com

I. Coverage of Health Topics across NIH Organizational Boundaries -Example

Enter “autism” as the search term and then click on the “casebooks” tab to discover that autism is independently covered by 28 separate articles distributed over five different NIH ICs including NHGRI (National Human Genome Research Institute), NINDS (National Institute of Neurological Disorders and Stroke), NIEHS (National Institute for Environmental Health Sciences), NIDCD (National Institute of Deafness and Communication Disorders) and NIMH (National Institute of Mental Health). None of these articles are content-coordinated and you’d be hard pressed to find any cross-referencing to similar information on different NIH web sites. There are no links to the proprietary health information products licensed by NLM and made available through MedlinePlus.

II. How Many Health Topics has each Institute Published? -Examples

Enter an institute’s acronym into the search box and select the casebooks tab to see the results. For example, NICHD (National Institute for Child Health and Human Development) publishes information on 97 different consumer health topics including diet, nutrition and obesity, infertility, birth control, developmental disabilities, lactose intolerance and “tummy time.” Likewise, NCI (National Cancer Institute) has 233 articles on various malignancies, both common and rare.

We encourage you to investigate health topics of personal interest or importance and let us know if you discover anything unusual (good or bad) either with our system or its NIH and FDA-derived content. Better yet, create a casebook on your topic (containing, for example, comments and ratings on various preeclampsia web sites) and share it with everyone.

There are two basic types of casebooks: 1) resource casebooks containing non-copyrighted, but fully attributed, gov’t consumer health information and 2) user-generated casebooks containing any health information they’ve found useful on this site or anywhere else on the web. Various tools for sharing the information with others, including embedding links to it on other sites, are available.

Casebook technology allows you to create and annotate custom remixes of the information for your own purposes (your content is all automatically organized, behind the scenes, by the medical ontology engine, thus relating it to all other medical knowledge on the site). Think of this as being able to create new, virtual consumer health institutes on demand and suited to individual needs or special purposes.

The Resounding Health website is currently a technology demonstration and research tool. It is used as the research platform and resource for all of the stories on our consumer education and outreach site, http://www.CelebrityDiagnosis.com, many of which bring the attention of average consumers to gov’t health information that they’d be hard-pressed to locate any other way.

I wasn’t at NLM then and I don’t know who came up with the idea. But it must have sounded pretty “cool” and “edgy” at the time.

Our website – godsend that it is for our women – is old and desperately in need of upgrading, mobil-izing, etc. which I’m happy to report we are in the process of doing. If any of the experts on this thread would be willing to provide input or expertise for this undertaking, we’re all ears.

We are, as far as our analytics can tell, the #1 source of info on this important topic, trying to stay relevant and life-saving for the millions of moms and babies impacted each year around the world.

Loving this entire thread… accessible and digestible consumer health information is central to our “empowered patient” theme.