More Evidence of the Patient-Controlled Data Revolution (Patients Like Me)

patients_like_me.jpg
Patients Like Me [patientslikeme.com] seems like the most useful example of the combination of sophisticated data visualization and online social media. It demonstrates the power of the social aggregation of data, and the tilting equilibrium between privacy and value creation for people who crave to access valuable information about their own faith.

The first, almost obvious, feature allows people with a life-changing disease (e.g. ALS, HIV, Parkinson's, Chronic Fatigue Syndrome, MS) to connect to others in the same situation, for instance to learn how they treat their disease or to compare one's own health progress with those of others. Even more, by sharing their own health profile, patients are empowered to exchange valuable data about the real-world effects of specific medical treatments. In practice, this means anyone can explore a rich collection of crowd-sourced data about individual diseases, symptoms or treatments.

For instance, patients are able to explore the efficacy, side effects, adherence and burden of the "Carbidopa-Levodopa" treatment meant to remedy Parkinson's disease, or investigate the effects of Lithium intake on the ALS disease, solely based on the quantitative and qualitative input of thousands of individuals.

In what seems a quite revolutionary take on medical privacy, the diseases, treatments and symptoms of individual patients can be filtered, searched and compared. Alternatively, people with a specific symptom, let's say "fatigued", can investigate the effectiveness of the most popular treatments or compare their faith with the other 27,000 patients that experience this very symptom.

See also Who is Sick Map, Google Flu Trends, CureHunter, Diseasome, Visualizing Health Issues, The Cost of Getting Sick and Epidemiological Diseases Map.

Yet another example of what many believe (myself included) is an imminent revolution of the role of patient-controlled medical data. This is very much in the spirit of Indivo. When you combine the serendipitous nature of the mashup-web with a thirst amongst patients to learn more about their chronic diseases within a social network outside the confines of institutions that have less incentive to adopt such technology, it is only a matter of time before things change in a very fundamental way.

Stay tuned for much more on this topic.

Ancient origin for monkey version of HIV: Scientific American

These projections, however, assume that SIV DNA sequences mutate at the same rate as HIV's modern pace of evolution, which many say is much faster than historic rates of change. So some researchers have sought other lines of evidence. A related virus found embedded within the genome of lemurs from Madagascar pointed to a timescale of millions of years. And although SIV-infected chimpanzees remain susceptible to disease, other wild monkeys that have coexisted with SIV for longer, including sooty mangabeys and African green monkeys, seem to have evolved complete immunity to the virus, indicating an extended period of coevolution.

" .. it probably took a long time before SIV turned harmless in most monkeys. As such, people should not rely on evolution alone to fight the threat of HIV, she cautions. "Will humans [...] learn to cope? Perhaps. Do I want to wait for that? No."

Ph.D Thesis Mindmap

Phdthesi

Ph.D Thesis Mindmap

I was shown an app on our new Android phones that I was not aware of called Thinking Space.  It was free so I downloaded it.  While I was trying it out, I used it to try to find an outline for the thesis research I've been doing as final class projects in my last two classes: Bioinformatics and Cryptology.  In the former, I modified a library I've used in the past to segment aligned ontology modules from SNOMED-CT and the Foundational Model of Anatomy.  Using a tool that produces an alignment of both for a user-specified particular domain, I computed new features in a research dataset using logical entailment and some additional axioms regarding anatomical sites of diseases and medical interventions.

The general idea was to build a prototype framework for "biductive" machine learning: i.e., inductive, machine learning informed by deductive inference over two or more reference ontologies. 

In the middle of the upper part of the mindmap is a list of core components of informatics methodology from Bernstam et al. [1].  I've been looking through the literature for anything about core curricula for biomedical informatics programs and the related core competencies.  In particular, I've been trying to see which of those are addressed by XML processing, Sem Web, and XRX technology.
 
The bottom part of the map is about information system infrastructure.  In the part above, is another list of informatics competencies listed in the same paper.  Under data collection, is a topic (Semantic Web-based workflow systems) of the chapter I recently finished in a Springer text for (amongst others) enterprise architects. 

I'm trying to find a common underlying theme, but I have an outlier that I can't account for (at the bottom part of the map): Patient-controlled Health Records.  I've been very interested in the idea of self-owned patient web portals used for simple information management of chronic diseases like hypertension, for instance.  I believe the inversion of control of information from institutions to individuals is inevitable and I'm interested in what kinds of web-based technologies can be used to empower patient's rights through the use of cheap, interoperable patient record systems based on royalty-free technology standards. 

The whole debate around the role of patients rights and individual rights got me thinking about how technology can move the the debate out of the cynical realm of goverment and institutional politics that has a way of having a parochial approach to technology adoption.  It would be nice to move the debate into the hands of the people that healthcare is meant to serve in the first place: patients, us.  So, how do technology artisans contribute to that conversation in a different way.  Why can't, medical information systems be grown in the same cheap/free software communities that power the mashup web? 

There seems to be some movement in that direction.  This is the impression I get when I see tools such as Indivo available freely as customizable Python libraries (based on Django) and with implementations of (for example) the OAuth protocol. 

So, for my cryptology class project, I did some research on Elliptic Curve Cryptography and using URIs as certificate-less public keys of a web-based crypto system that allows a patient to delegate access to their encrypted medical record content to an authorized healthcare institution.  However, the challenge is trying to find a common theme between PHR tool building and core methodology.  So, I downloaded ThinkingSpace on my Android Phone, and created this mind map to help me vizualize the space of research I've been doing to find a common theme to start working around.  I posted it to posterous via  Pixelpipe.

Clinical Data Acquisition, Storage and Management

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SpringerEncDBSystemsEntry.pdf (76 KB)
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Pre-publication copy of entry. Springer requires placing the following notice:

"Chimezie Ogbuji's entry on Clinical Data Acquisition, Storage and Management will soon be published in the Encyclopedia of Database Systems by Springer. The Encyclopedia, under the editorial guidance of Ling Liu and M. Tamer Özsu, will be a multiple volume, comprehensive, and authoritative reference on databases, data management, and database systems. Since it will be available in both print and online formats, researchers, students, and practitioners will benefit from advanced search functionality and convenient interlinking possibilities with related online content. The Encyclopedia’s online version will be accessible on the platform SpringerLink.

Click here for more information about the Encyclopedia of Database Systems. 

Chimezie Ogbuji, "Clinical Data Acquisition, Storage and Management"
Encyclopedia of Database Systems, Editors-in-chief:
Özsu, M. Tamer; Liu, Ling , Springer, 2009.
(print and online)