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Posts Tagged ‘HealthVault’

navi5Results are in from the Navigenics test and my sometime absent mindedness is unlikely to be caused from Alzheimer’s as I am at a very low risk of this disease, at least according to my genetic make-up.  Boy, do I feel better now.

At the beginning of 2009, I announced that I would be participating in the Scripps Research study on the impact of knowledge of one’s genetic disposition to behavior. In other words, does advanced knowledge of genetic disposition change behaviors of consumers to mitigate that disposition?  This is a multi-partner research effort that includes Scripps Research, Navigenics, Affymetrix and Microsoft HealthVault.

Purpose of my participating is to first gain a better understanding of such direct to consumer (DTC) genetic testing services and secondly, see how such information may be used in the future within the context of a Personal Health Account (import SNP data into HealthVault).

The Experience:

Thankfully, I was not in a rush to get the results as it took Navigenics nearly three months to turn this around, though Navigenics did inform me up-front that it would take some time as they would release results to all participants at the same time.  But alas, I finally received an email with a link to the site wherein I was dutifully asked to securely sign-in.  Note: security password requirements are quite strict.

After logging in, Navigenics provides a thorough educational review of how the data will be presented, which consists of gray and orange boxes.  These boxes give the estimated lifetime risk for each of the 22 conditions (ranging from Abdominal Aneurysm to Stomach Cancer) that Navigenics currently tests for.  They add additional tests to their service as research dictates (new genetic markers identified and reported upon in peer-reviewed research papers).

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Having a gray box for a given genetic disposition is good as it signifies a relatively low genetic risk to a specific disease.

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But those orange boxes are the ones you really need to look out for as according to research studies that Navigenics researchers deem worthy, your genetic make-up signifies an overall risk that is either higher than 25% or your risk is 20% or more higher than the rest of the population.

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Prior to reviewing results, Navigenics makes many statements to the effect that don’t go off and do something drastic based on your results.  They also provide you the opportunity to selectively choose which results to review.

When reviewing results, Navigenics does a very good job of providing information about a specific disease, what the results mean, how they were obtained and the relative ratio of genetic disposition and environmental risk factors in contracting the disease.  And for those that are particularly inclined to the science behind the findings, links to specific research papers on a given gene and disease association. Quite an impressive amount of information that Navigenics provides to the consumer.  In addition to this online information, Navigenics offers genetic counseling, via phone, to go over the results and their implications. This is particularly helpful for those whoe results may point to an extremely high risk of contracting a fatal, yet treatable disease.

Always looking for the biggest bang for the buck, I selected all 22 tests/conditions.

Now I am not going to share the specifics of those tests but what I will share is my disbelief and deep concern about such DTC genetic testing services.

Prior to going through with this exercise, I spoke to Prof. Rudolph Tanzi of Harvard and author of Decoding Darkness who just happens to be one of the researchers responsible for finding the first Alzheimer’s gene.  Prof. Tanzi was quite frank basically stating that such services are simply a modern form of snake-oil salesmen.  His primary argument against such services is that the science is simply not mature enough to make any predictions as to future genetic risk.

The problem is that for every gene that may put you at risk for a given disease, you may also have a countervailing gene that has yet to be discovered that cancels out that bad gene.  Thing is, today we know so little about the interactions between genes – we are in the “stone age” of genetics.  I also was not that comforted to learn that in all those gray and orange boxes for which you were compared against a broader population, that population consists of a meager 60 Americans of European descent who have participated in the HapMap Project. Hardly representative, so I’m not placing too much credence to any comparisons to the population in my results.

Digging deeper into one specific disease, Diabetes Type-II,  I showed a high risk with 15 of 22 markers for this disease found in my genetic code.  Nervous? Concerned? Rushing off to make an appointment with a doctor? Combing the Internet for more information on this disease? No, I have done none of these things for contrary to the results, I do not believe I am at risk.

Why this laissez faire attitude?

I know of no blood relatives on either side of the family that have ever contracted diabetes, period!  It simply does not exist in my family-tree so I can only conclude that there are quite a few genes in my genetic make-up that have yet to be discovered which are firmly putting the brakes on those 15 markers that, according to research, put me at risk.

Which leads me to wonder: If the Navigenics test for diabetes delivers such poor results (Note: Navigenics tests for 22 diabetes markers, a significantly large number of markers compared to other disease tested for, e.g., heart disease has only 4 markers), are the other diseases tested for even more suspect?  Willing to place a very big bet that the answer is yes.

Therein is the risk for the general population who may embark on such a genetic adventure.  After receiving their results, might a consumer take actions unwarranted or worse, put them at even greater risk.  We are not in just the “Stone Age” of genetic research, we are at least that far back, if not greater in the knowledge among the general public, including physicians, on what genetic tests results truly mean.  We are simply not there as a community to make any drastic decisions at all based solely on genetic test data.  That’s not to say we can’t go forth and simply live healthier lives: eat well, sleep well and exercise, advice often given by Navigenics to control environmental risk factors.

But as pointed out in the previous post, maybe we need to think differently about what might be the potential value of performing such a genetic tests such as personalized medicine, clinical trials recruitment, etc.  To enable such activities, the ability to export one’s genetic information into their personal health account is necessary.  Unfortuantely, despite the partnership with HealthVault, Navigenics did not provide me an option to upload my SNP data to my HealthVault account.  Hopefully, this is forthcoming and when it is, I’ll report on that experience as well.

For another perspective, encourage you to read Berci’s experience with Navigenics.

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just_walking_bMy friends over at the Humana skunk-works CrumpleItUp (sure hope they aren’t paid in Human stock after yesterday’s rout, 24% drop – OUCH) put up an interesting post that takes a hard look at Wellness programs and why most fail miserably.

Breaking down Wellness efforts into three models; traditional, heavy-handed top-down, specific games to encourage and engage the consumer in Wellness activities and developing games that are first, FUN than inserting Wellness into the fun.  If any of you have been to CrumpleItUp, you will know where their hearts and souls lie – let’s make it fun, let’s make it engaging and healthy behavior will be an outcome, naturally.

This is in part why their Freewheel!n effort was such a success. Freewheel!n got folks back on bikes, something they may not have experienced in decades, reconnecting them with their youth and the joy, freedom and simplicity of riding a bike (full disclosure, I am an extremely avid cyclist).

But what may be the real challenge of any Wellness program is how to make them sustainable over the long term to truly impact and change behaviors that most likely evolved and have been in place for years, if not decades.  It is not like we just throw a switch and the consumer changes their behavior.  Sure, under top-down Wellness programs from say an employer, incentives may be provided that an employee will readily capitalize upon and change behavior in the short-term.  But what happens when that program is discontinued, or the employee changes employers?  Do they continue those healthy habits without the incentives?

To make Wellness systemic and truly change behaviors we do need to make Wellness fun and as CrumpleItUp articulates in their post, embed that healthy fun behavior into activities that consumers are already doing, maybe giving a nudge in the direction for them to do more. Setting up peer-to-peer (P2P) contests is one approach which CrumpleItUp is doing with Horsepower Challenge.

Recently, Sean Nolan of Microsoft’s HealthVault group wrote a post on what one of their developers did in building a HealthVault app called, Walk Me. Walk Me is similar to the Horsepower Challenge in that it focuses on just walking, but unlike Horsepower, Walk Me looks at bringing together peers based on BMI and age wherein one can see how they compare to others in their physicial activity of simply walking. The BMI and age data is based on their HealthVault profile. As this is completely consumer opt-in there are no privacy issues/concerns, it is a consumer’s choice whether or not to participate.

Taking this all one step further (no pun intended) Wellness programs such as this may also cater to our inner desires to leave this world just a little better off than we found it.  As I mentioned to Sean when he informed me of his post, I like it Sean, but why not tie all those steps walked to say some charitable program like FreeRice, donating a grain of rice for each step walked or in a similar vein a penny for each step to an organization like Kiva.org.  One could even set-up friendly competitions between groups as to who might ultimately contribute more to such humanitarian relief efforts.

“We cannot live only for ourselves. A thousand fibers connect us with our fellow men.”

– Herman Melville

There is so much more that we, as a wealthy nation, even during these tight times, could be doing at an individual level to improve not only our health, but world health.  Time to get walking.

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wii-fitThe extremely popular Wii gaming system will begin connecting directly to health professionals in April.  It appears that this will be first offered in Japan combining the existing Wii Fit and Wii Balance devices with bi-directional online communication capabilities.  Moving beyond just providing the gaming devices and platform, Nintendo is partnering with NEC, Hitatci and Panasonic to provide a service whereby users of Wii Fit or Balance will be able to send their work-outs to “health professionals” and receive feedback, via email, regarding these workouts with suggestions (e.g. only 10 push-ups? do 20 next time).

Interesting concept but half-baked.  Sure, it may be nice to get some feedback on a given workout but is it really all that useful if you do not have any biometric data to go with it?  And what is a “health professional” anyway, a recent graduate of We Are Physical Therapy University?

We’ll have to wait and see what ultimately arises from this initial trial balloon.

In a broader sense, it really is a brilliant idea that may quickly move beyond the shores of Japan to North America.  We can readily foresee employers and payers adopting a Wii Health-type of service combining the Wii, with the bi-directional communication capabilities to health coaches and maybe even to a consumer’s PHR.  HealthString is one such PHR that has a heavy focus on health coaching and sells their product/services almost exclusively to employers. One can easily imagine an employer who offers HealthString to its employees combining their health coaching service and PHR with an incentive/rebate on the purchase of Wii Fit to foster healthy behaviors among its employees to improve overall population health.

Or maybe, again via a rebate program, an employer can set-up an internal team challenge using something like Limeade (another health solution targeting employers), combining their solutions with the bi-directional communication and logging of work-outs capabilities of Wii Fit to promote peer-based fitness.  Clearly, there are all sorts of permutations and scenarios of services that one can build upon with the Wii Fit and this future bi-directional communication capability.

Makes us wonder if Nintendo has had any discussions with the folks at HealthVault and their Connection Center.

Oops, HealthVault is owned by Microsoft with its competing Xbox.  Nintendo, better look to Google Health and Dossia, both would be receptive to their overtures.

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Last Friday, had the opportunity to present to MITRE and their Healthcare Transformation group.  This MITRE group is responsible for developing LAIKA, the platform used by CCHIT to validate EMR solutions for certification.  Extremely bright group of engineers with some excellent ideas and many good questions over the course of my roughly 1hr presenation.

Purpose of presentation was to give these engineers a broader perspective on trends occurring in the HIT sector, and specifically trends in consumer-facing HIT.  As Chilmark Research has been conducting extensive research on Cloud Computing in healthcare, for our next report, much of the presentation focuses on the personal health platforms (PHPs) Dossia, Google Health and HealthVault. The presentation also draws upon past research on PHRs and the inevitable convergence of the two.

Warmly welcome your feedback on the presentation, whether it validates what you are seeing in the market or if there is something we may have missed.

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genetics-drugsYesterday’s post talked about my recent “plunge” into the world of genetic testing via participation in the Scripps-Navigenics study.  A comment by Microsoft HealthVault’s Chief Architect, Sean Nolan addressed one of my questions: Exactly what would be the data type that Navigenics would pass over into one’s HealthVault account?  Sean stated that it would be about as rich a data set as possible with importation of the complete SNP files and stored in NCBI dbSNP format.

This got me to thinking last night that the real long-term value of genetic testing may not be in understanding one’s predispositions to specific diseases, though that is what the Scripps study (and Navigenics marketing) is focusing on.  Rather, the true value (or at least larger value proposition) may come in a few years time when this rich genetic information is combined with one’s medication regime to develop a more personalized and effective medication protocol.

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dna_strand2In early October, a joint announcement was made by the medical research institute Scripps, genetic testing company Navigenics, genetic testing instrument supplier Affymetrix and Personal Health Platform provider Microsoft HealthVault to conduct a 20 year study that will seek to determine if knowledge of one’s genetic pre-dispositions to diseases would change one’s behavior.

Dr. Eric Topol of Scripps will lead the research project.  Navigenics provides the test kits and initial assessment (basically, you get a year subscription to Navigenics’s service, normally $2500. for a BIG discount). Affymetrix provides Navigenics with DNA tools to perform the analysis and all participants will receive a HealthVault account to store the information in a personal health data repository.  Scripps is hoping to recruit 10,000 participants.

In late October I received an invitation to participate as a “friend of Scripps” in this research study.  After much hemming and hawing, I decide to register to participate in Late November. My justification for registering was to use myself as a Guinea pig to report on, via posts here, what it is like to go through a genetic test process, the impact, or lack thereof of receiving the results and might the results be useful, if at all, once they are in a HealthVault account. For my price of admission, I’ll get a one year subscription to the Navigenics service,testing for disposition to at least 23 diseases (more may be added over course of year) but without the usual counseling service.

Why the initial reluctance to participate?  That reluctance stems from the simple fact that genetic testing is still very much in its infancy.

Today, there are a substantial number of genetic researchers that find such services as Navigenics, 23andMe, deCODEme as a load of hogwash.  In speaking with one of these detractors, Dr. Rudolf Tanzi of Harvard and MGH who also happens to be the co-founder of two of the four genes that have been conclusively identified to late onset Alzheimer’s and author of “Decoding Darkness: The Search for the Genetic Causes of Alzheimer’s Disease.” Obviously, no slouch when it comes to the topic of genetics.

Tanzi’s biggest gripe is based on a simple premise: How can a company (such as Navigenics) even begin to give a consumer a relative ranking on predisposition to a disease when there is so little evidence?  For example, in his area of study researchers have identified some 350 candidate genes that may influence contracting late onset Alzheimer’s.  Researchers know very little about any of these genes today and even more importantly, have virtually no understanding of the interaction between various genes and in particular genes that may be present which offset more lethal genes.

Navigenics thinks they have developed a statistically valid approach to get around this problem,  First, they only test for those diseases where they believe the research is comprehensive enough “meets their review standards” to test for specific genes (note: Alzheimer’s is in that list, something that Tanzi thinks is absolutely nuts) and secondly, they combine the genetic test results with what information a customer provides via an in-depth online questionnaire on health and family history.

Getting back to me, the genetic testing Guinea pig and the process so far…

In signing up for the test, I had to review and agree to the Terms and Conditions and Informed Consent (some 21pgs in all) for the research project.  The documents had all the usual disclaimers, legalese, assurances that privacy will be paramount (though Navigenics had a loophole stating that by agreeing, you can not sue them if they inadvertently release your data – gee thanks) and more than a few warnings to be careful as results may effect one’s emotions.

After this sign-off, next was the HRA (health risk assessment).  This was a very comprehensive HRA with many questions beyond my ability to answer, e.g., health and susceptibility of various distant relatives to all sorts of specific diseases.  Took a good 30-40 minutes to answer all the questions – this sucker was LONG.  Honestly, after answering the questions, one could put a consumer into a pretty tight box as to what they may or may not need to watch out for in the future.  It may well be here that Navigenics draws the vast majority of data/information in performing an assessment with the genetic test more of a gee whiz, ain’t that cool type of thing.

Couple of weeks later, received a nondescript little white box.  Inside was the saliva collection kit and packaging to mail kit back.  Went through the process and last week, received an email from Navigenics stating that the sample was at the lab undergoing analysis.  Results are guarnateed to be available no later than April.

Looking ahead, Scripps will be requesting that I take another HRA at 3 months and 12 months after receiving the results to determine if there has been any behavioral changes made as a result of new knowledge of genetic dispositions. After that, Scripps may contact me sporadically over the next 20 years to see if there have been any other behavioral changes.

What I’ll be particularly interested in, and will post on in the future are the following:

  • Does knowledge of predispositions to diseases affect my behavior? Right now, I’m on the fence in this regard and really do not have a clear picture as to how I might respond.
  • Will there indeed be any emotional repsonse to receiving the tests results?  I already know that being fair skinned, the sun is no friend on mine, but what about things I may not know?
  • How is this information communicated and in particular, what will actually show-up in the HealthVault account?  Will that data/information transmitted to my HealthVault account be useful (leverage) in the use of other health apps, e.g., TrialX for clinical trials?
  • More broadly, what does the research at Scripps show?  Is there any correlation between knowledge of health risk(s) and behavioral changes?

It will be an interesting journey over the next 12 months or so and I promise to keep you posted.

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optum1Seemingly on a roll, OptumHealth, the consumer facing health and wellness division of United Health Group (UHG), the nation’s largest health insurer, announced yesterday that it will support health record portability by allowing members to export their Optum PHR data to HealthVault.  Basically, what this means is that any user of the Optum PHR (formerly know as Health AtoZ which is free to any and all, not just UHG members – it is ad supported) will be able to move their health data out of the Optum PHR and into HealthVault, with HealthVault serving as a long-term, independent data repository that is controlled by the consumer.  This action follows on the footsteps of a similar announcement by Aetna in October.

While the press release states that this is being offered to all 25M+ members of UHG, it raises all sorts of questions.  A few which we hope to have answers for next week when we speak to Optum are:

  • Just how many UHG members are actively using the OptumHealth PHR today?
  • Exactly what types of data will be portable?  Is it everything that resides in a member’s PHR (e.g., claims, maybe PBM, HRA data) or some subset thereof?
  • When will this be made available, is it live today or will it be phased in?
  • What is the business case for making this happen?  Is this something that employers are asking for or are there other justifications?
  • Will you be making similar announcements in support of Google Health and Dossia (Dossia is a bit of a no-brainer)?
  • How will data flow between the two systems (publish/subscribe model – RSS, Atom, etc.) and what will be the data standard used?
  • How will you be positioning and advertising this capability to Optum PHR members?

We’ll put up a more in-depth post next week, provided OptumHealth is forthcoming with answering our questions.

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