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Are We The Source of Knowledge?

Apr 26, 2011, 3:01 AM, Posted by Paul Tarini

Are We The Source of Knowledge?

We started hearing about it a couple years ago: an ALS member of Patients Like Me had seen (and translated—it was in Italian) a medical conference poster with results showing lithium carbonate could slow the disease’s progression.  That study was a single-blind trial of 16 treated patients and 28 controls.  The results spread through the ALS community and soon, patients began talking their physicians into prescribing lithium carbonate off-label. PLM soon had 348 members reporting on the effects of their use of the drug.

 PLM realized they had an opportunity to study the experience of their members who were—effectively—experimenting with the drug.  PLM couldn’t randomize, so they developed an algorithm and matched 149 treated patients to 447 controls based on the progression of their disease course.

 On Sunday, the journal Nature Biotechnology published PLM’s findings showing after 12 months of treatment, lithium carbonate had no effect on disease progression.  PLM reports that subsequent clinical trials reached similar conclusions.

 What’s important here is to recognize the potential to conduct research using patient self-reported data from an online social community.  PLM’s sweet spot is social communities for ambiguous diseases (that is, diseases we’re still learning about, diseases that don’t have clear, effective treatment protocols) where the patient does a lot of care at home.  To be sure, PLM is a pretty sophisticated community, but it’s intriguing to think about where we might be in 10-15 years.

A couple of us met last week with PLM’s Jamie Heywood and Dave Clifford.  We had a ranging discussion—hard to avoid with Heywood—that included linking patient self-reported data with clinicians, conducting research with this data, and business models.  A fundamental question Heywood is exploring is “whether it’s faster to get to learning health system through the current confines of the health system or through something like PLM.”

Given the growing ability and inclination of patients to capture and share details on their own experiences, how powerful a role is there for the analysis of this sort of data in our efforts to accelerate the discovery of new treatments for disease?

ResistanceMap Shows Rise in Dangerous Bacterial Infection

Apr 11, 2011, 1:24 AM, Posted by RWJF Blog Team

This guest post was submitted to Pioneering Ideas by Extending the Cure Research Analyst Nikolay Braykov. Extending the Cure researches policy solutions to prolong the useful life of antibiotics, an approach to fighting the rising trend of antibiotic resistant bacteria that was discussed by several prominent news outlets (The Guardian, Christian Science Monitor, Health Affairs) during last week's World Health Day.

The online tool ResistanceMap has released a new video that shows the spread of a deadly microbe able to survive treatment with the newest and most potent antibiotics in the current arsenal.

That microorganism, called carbapenem-resistant Klebsiella pneumoniae (CRKP), can cause potentially fatal pneumonia, bloodstream, or wound infections among elderly hospital patients. The featured video offers a first-of-its kind geographic retrospective of the pathogen’s emergence using nationally-representative data.

ResistanceMap, is developed by Extending the Cure – a nonprofit project sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio that researches policy solutions to prolong the useful life of antibiotics. This online tool, which visualizes changes in resistance levels across regions of the U.S. from 2000 – 2009, summarizes data from microbiological labs across the country that measure bacterial drug resistance – the ability of microbes to survive treatment with antibiotics.

Whereas previous ResistanceMap videos highlighted the geography of established threats like Methicillin-resistant Staphylococcus aureus (MRSA), the new video tracks CRKP since its emergence in the early 2000s and adds to existing evidence that health authorities may be up against a new epidemic unless urgent steps are taken.

As the subject of this year’s World Health Day on April 7, drug resistance has drawn substantial attention from media like The Economist or MSNBC. In many reports, CRKP is heralded as the next “superbug”, particularly following reports on its growing prevalence in Southern California. One reason is the lack of proven treatment options – when last-resort drugs like carbapenems don’t work anymore, physicians can only experiment with combinations of antibiotics, often older drugs that have been shelved because of serious side effects. Another is that, as pointed out by a report in Scientific American, gram-negative bacteria like K. pneumoniae are very common, easily share resistance genes, and have been neglected by pharmaceutical researchers.

ResistanceMap helps us put the media coverage in more context.  In comparison with MRSA or other resistant bacteria, CRKP is still a rare, localized phenomenon - fewer than 3% of K. pneumoniae showed carbapenem resistance in 2009 and the bacteria was exclusively found in hospitals and nursing homes.

Still, the maps show how an outbreak initially confined to few New York hospitals can spread to facilities nationwide in a very short time. First emerging in the Mid-Atlantic with just a few occurrences in other regions, CRKP can now be found in 36 states.

K. pneumoniae are part of the normal microbial flora in humans and like all bacteria, their populations inevitably develop resistance mechanisms as organisms adapt to survive treatment. In order stay ahead in the race between bacterial evolution and drug research, public health officials have to act now – active surveillance and adherence to the latest CDC prevention and control guidelines can curtail the spread of CRKP before it spreads even further.

Enacting sensible, timely policies depends on our ability to inform constituents about emerging threats and to analyze existing ones. Thanks in part to initiatives like Extending the Cure, there is more public awareness and scientific knowledge available to help prevent a major crisis from unfolding and letting CRKP become the next MRSA. 

And the Winners Are...

Oct 7, 2010, 10:00 AM, Posted by Steve Downs

As I mentioned back in August, RWJF joined the Health 2.0 Developer Challenge by offering small prizes for three different challenges:  1) building apps that leveraged the Blue Button initiative; 2) apps that bring the data from County Health Rankings into everyday decisions; and 3) bringing Project HealthDesign designs to life by building apps that work on commercial PHR systems.  At the time I said that we wouldn’t know what to expect – that we might not get anything useful at all from this exercise.  WRONG!

The response was terrific.  I won’t say overwhelming, but given the modest amount of prize money (okay, Markle scored coffee with Clay Shirky, which is no small deal) and the relative short amount of time to respond (barely a month), I’d say pretty darn good.  And definitely useful.

I’m a big fan of the Blue Button initiative for two reasons:  1) it gets the data out of the health care system and into the hands of users, where a marketplace of translators, interpreters and other tools can grow around making data useful to people; and 2) it’s beautifully simple.  The response highlighted the potential of this market:  we had large companies like Adobe and Microsoft build really valuable utilities – to translate a largely unreadable ASCII text files into very nicely designed PDF documents and to import Blue Button data into HealthVault, respectively.  But we also saw smaller organizations (seven in all) like MedCommons and RememberItNow showcase more narrowly focused apps that deal with important tasks – like getting a second opinion on a radiology image or remembering to take your meds.  Adobe came out on top in the end – and deservedly so as they built a really nice app – but the key takeaway is that they’re just the tip of the iceberg of what could come.  Hats off to the Markle Foundation, CMS and the VA for bringing Blue Button so far along so quickly.

The County Health Rankings challenge drew a number of interesting submissions.  Where we live, work, learn and play dramatically affects our health.  So when you’re choosing a place to live, wouldn’t you want to look up health indicators the way parents look up data on the quality of the schools?  That’s what the challenge winner, Acsys Interactive, makes possible.  They embedded the county health rankings data into their mobile real estate app.  So now when you want to get the scoop on the house for sale you’re driving by, you point your phone at it and get both real estate data and easy access to county health data.  The challenge drew four other submissions, which also included a utility to have the data texted to your phone when you text in a zip code and a tool to help understand asthma risks in a given county.

The Project HealthDesign Developer Challenge was won by Ringful Health, which produced a really slick app for managing chronic pain.  With it, you can use your iPhone to jot down your pain levels and triggers, get feedback on frequent triggers and how effective your medications have been at controlling your pain, and generate reports that you can share with your doctor.  Ringful had been working on this app, but, inspired by the design from Roger Luckmann’s team at UMass, added several new features and then built back end integration with the HealthVault, Google Health and Dossia personal health record services.  Another competitor, CureTogether, extended their site, which helps people track their observations of daily living (ODLs) like sleep, exercise, and food intake, to include lab test data.  A third, and very intriguing, submission came from Fred Trotter, who built an open source utility to track ODLs and store them on Twitter (in a protected account) and then use Grafitter to analyze the data and display patterns.  Fred’s solution is especially interesting because he’s leveraging existing infrastructure and by building an open source tool, he’s inviting others to take it further.

So all in all, I’m quite pleased with how the challenges went.  And it makes me wonder what challenges we should put out next.  Any ideas?

Conversation Continues Around OpenNotes - Let the Researchers Know What You Think

Jul 27, 2010, 12:34 PM, Posted by RWJF Blog Team

A week after the Annals of Internal Medicine published a Perspective Paper on OpenNotes, the Pioneer-supported project is continuing to generate a robust discussion online. Notably, The New York Time’s “Doctor and Patient” columnist Dr. Pauline Chen’s piece, “Should Patients Read the Doctor’s Notes,” has catalyzed a thought-provoking discussion on the Times’ Well blog.

Although there were more than 100 comments the last time we checked, most of the debate focuses on a single theme that matches the same concerns raised in the Annals paper – the patient’s “right” to access their information vs. the doctor’s “right” to determine what information is appropriate for their patients to receive. Each “side” has a variety of reasons behind their stance, from the desire to verify the accuracy of what’s included in their medical records on the patient-advocacy side of the house, to the fear voiced by numerous doctors that sharing notes will unnecessarily worry or confuse patients not well-versed in medical jargon.

While most comments are in favor of providing access – with a few adamantly opposed to the idea – there were also those who clearly grappled with both sides of the issue.

One commenter supported the concept begrudgingly, suggesting that providing access to medical records “isn’t what patients really want;” they want doctors who “make them feel heard” and access to their records is just something that will have to do for now. One doctor, who was willing to share his notes with his patients, suggested electronic medical records — with their drop down menus and limited space to tell the “story” — have made doctors’ notes less valuable to the patient.

Another doctor summed up his perspective with the comment, “Geez, this is not easy stuff.”

“The patient is your client and entitled to your thoughts and insights. But you are also a detective, and the patient is in some sense your “perp.” There are things in the medical record which patients may not understand, and things which if they understand them they make not like. But morally and legally I think you have to come down on the side of the patient’s right to know.”

These comments demonstrate just how complex of an issue the seemingly simple act of sharing visit notes really is. That is why researchers are looking to generate as much feedback as possible, as it will help them address all the pertinent questions when the study’s results are ready to be analyzed. If you haven’t weighed-in with your opinion already, there’s still time to get involved in the conversation and let the researchers know what you think by taking the Annals Physicians OpenNotes Perspective Survey.

 

A landmark first for the Archimedes model

Apr 19, 2010, 4:13 AM, Posted by Susan Promislo

At the very end of March, study findings were released in the online edition of The Lancet indicating that it is more effective from a cost and detection standpoint to begin screening for Type 2 diabetes in people between the ages of 30 and 45 — 15 years ahead of what established guidelines had been recommending.  Subsequent screenings should take place every three to five years thereafter.

While this is an important result for the medical community, the most significant piece of this story, in our opinion, was not covered in the news.  What really caught our attention was the fact that this was the first time The Lancet has ever published a peer-reviewed paper for which the research was based entirely on a simulated population and treatment options existing within a mathematical model – in this case, the Archimedes model of human physiology, diseases, interventions and health care systems.

For the study, the researchers simulated a population of 325,000 nondiabetic 30-year-olds.  According to Archimedes President and CEO John Beasley, “This paper presents the results of an international study that would never have been possible using an actual clinical trial. It would have required enrolling and following more than a million people for 45 years; the cost would have been astronomical.  The study examined the criteria for deciding when to screen for diabetes and Archimedes was the only model that could conduct a clinical trial simulation at this advanced level.”

We’re excited to see validation of the strength of the Archimedes methodology at this level.  Watch the blog for more updates soon on the status of the ARCHeS project, which will make it possible for public and health policy leaders to access the model to conduct their own virtual clinical trials from their desktops.  The vision is that a wide variety of key decisions will be informed by equally strong results from the model’s predictive analyses, and the sharing of findings powered by Archimedes will become common practice in peer-reviewed journals.