Posts Tagged ‘Indivo’

Round Two: A Dossia Update

dossialogoLast Friday had the chance to meet up with the folks at Dossia, the personal health platform (PHP) formed by a consortium of employers. Purpose of the meeting was to get a deep dive update on Dossia and learn more about what they have done in the last year or so since they went live with Wal-Mart in fall 2008.

Since that go-live, Dossia has been fairly quiet, though they did announce two new “founding members” and released the open API this past summer. But frankly, not much to write home about.

Despite being the first “out the door” PHP, several months ahead of Microsoft’s formal announcement of HealthVault in early October 2007, Dossia has floundered.  First was the break-up with their first development partner, Omnimedix which led to Dossia forming a relationship with Children’s Hospital, Boston to use the open source Indivo PHP.  After nearly a year of work with the Indivo team, Dossia finally had WebMD linked into Dossia.  This integration between WebMD and the core Indivo-based Dossia platform was done under some pretty tight deadlines to meet Wal-Mart’s aggressive roll-out schedule – as part of their annual fall health fairs for employees across the country.  The push led to a less than ideal integration with the WebMD, an integration that could not be readily duplicated with any other third party independent software vendors (ISVs).  Thus, Dossia’s desire to build an ecosystem of apps on top of their PHP was put into stasis as the Dossia team focused on the Wal-Mart roll-out.

A year later much has been learned.

Dossia discovered that Indivo V3.2 was not fully scalable to meet large enterprise needs.

The Indivo platform was developed by Harvard Med School academics to test the concepts and policies associated with a patient-controlled health record system.  Prior to Dossia’s adoption of Indivo, the platform had seen small scale implementations at Children’s Hospital, MIT’s on-campus hospital and at Hewlett-Packard in association with a flu vaccination study. In each of these implementations, no ecosystem of apps was deployed via a common and open application programming interface (API).  This is understandable as Indivo was structured to test concepts, not necessarily structured for large scale commercial roll-out.

Since last fall, the Dossia team hired a completely new team of developers (size of Dossia team on par with Google Health ~15-18 FTEs), completely re-architected their platform to meet scalability requirements, addressed user interface (UI) issues (Indivo lacked a modern, intuitive interface), and developed a stable API that ISVs could use.  On October 15th, the new platform/UI went live.

The new API was released at the end of June and there are now 20 ISVs modifying their apps to sit on the Dossia platform.  As of today, in addition to WebMD, Dossia has eClinicalWorks (eCW is used in Wal-Mart’s retail & corporate clinics – don’t forget that eCW is also being sold through Sam’s Club), Healthtrio, Medikeeper and Metavante, who had acquired CapMed, live on the platform.

Indivo platform did not adequately address the myriad of state laws relating to record consent and sharing for teenagers.

Last year’s Wal-Mart roll-out was targeted at just employees. No incentives were provided, it was completely left up to the employee as to whether or not they wished to participate.  While Wal-Mart obtained “favorable” adoption, a key desire of employees was to have a Dossia account not only for themselves but also for their dependents. This desire led to some fairly significant challenges for Dossia in providing the appropriate consent structure for teenage dependents where State laws vary significantly.  These new consent requirements were built into the new platform as well.

Employers wanted support for dental records.

Another request from employer consortium members was the ability to support dental record data.  As part of the platform rebuild, Dossia has also embedded a dental data schema.  To the best of our knowledge, Dossia is the only PHP who has this capability today.

User interface needed to be simpler, more intuitive to provide easy access to personal health information (PHI).

During the meeting, Dossia provided a demo of its new interface, which was very simple to navigate, ranking on par with Google’s and a more intuitive experience than that of HealthVault.  Dossia has a slight advantage here in that employers define which apps employees have access to and upon sign-up populate an employee’s account with their claims and pharmacy benefits management (PBM) data.  For either Google Health or HealthVault, most consumers must go through the actions of loading their own data, choosing their own apps, etc., to establish a viable and personally value producing account.  This is similar to the adage “with freedom comes responsibility.”

Challenges Remain:

Dossia has made impressive progress since its initial launch last fall.  They have addressed the scalability issue, they have finally released an open API for ISVs to create an ecosystem of future apps and several other consortium members will be going live on the platform in the near future.  Despite these gains, challenges remain.

Where’s the lab data?

While Dossia has the ability to support clinical data in either CCR or CCD formats, today they are only importing claims and medication data from PBM firms.  Dossia, like Google Health and HealthVault does not support images today.  In somewhat of a surprise, Dossia also does not currently support lab data imports from either Quest or LabCorp.  This is a surprise for two reasons: First, viewing labs online has been found to be one of the most desired attributes of a a personal health account and secondly, both Google and Microsoft can import lab data from either of these national testing labs that represent some 80%+ of all labs done in the US.  If Google and Microsoft can do it, why not Dossia?

What’s the value proposition for employers?

Chilmark still struggles to understand what the value proposition is an employer to adopt the Dossia platform for their employees. Yes, Dossia may be a non-profit looking to provide a common platform that will provide employers more flexibility in the health-related tools (PHRs, HRAs, wellness apps, etc.) they can offer their employees to better manage employee health and wellness, but is that enough? Today, few employers see the strategic advantage of providing even the simplest of such tools (e.g. a WebMD account, an online wellness program, a disease management program that actually works, etc.) to their employees. If it is difficult for them to see value here, how can they realistically make the leap to considering a health platform with an ecosystem of apps?

And the value prop for employees is…?

Yes, the interface is much improved and yes, PHI data is automatically imported into an account and an employee’s Dossia account is fully their own, but beyond that, why would an employee sign-up to have an account? What other attributes and services does Dossia provide that are attractive to a consumer? According to Kaiser-Permanente and others, those who adopt and use such system use them to look at their lab data and conduct simple transactions such as Rx refills and appointment scheduling, all features that Dossia does not support.  So again, the value for a consumer in using Dossia is?

A couple of suggestions:

Rev up the marketing engine

If Dossia’s claims are indeed true, that the platform is stable, scalable and open to third party ISVs to build-out the ecosystem, then it is time for Dossia to become more aggressive on the marketing front.  Who better to market Dossia than its consortium members?

To date, Dossia’s consortium members have been extremely quiet and they are arguably, Dossia’s strongest marketing partner.  But if Dossia’s founding members are not out there promoting the platform, clearly stating the value proposition they see in being a member and even, as in the case of Wal-Mart, begin talking about the successes they have seen since launching Dossia, then how is any other employer suppose to buy-in to the concept?

And a concept it is for there are few in the industry today, including health benefits management firms and consultants, that fully understand what the ecosystem/PHP model represents and the value it may deliver to employers over the long-term.  The best advocates, the best marketing Dossia can receive at this critical juncture, is the vocal support of its members. So where are they?

Get the labs

Ability to access, view and share lab data is one of the top features that early adopters of PHRs and PHPs appreciate.  Dossia needs to get this issue addressed immediately. End of story.

Delivery a value proposition that employees will appreciate and use

Critical to the success of the most popular personal health systems in the market today are their ability to support transactional processes.  While it would be extremely difficult, if not impossible for Dossia to support such functions as appointment scheduling, Rx refills, eVisits with one’s primary care doctor, there is one transaction area where they could excel: providing health-related financial decision support tools.  Such tools would provide support for health savings accounts, plan deductables and balances, pricing transparency for common procedures, medications, etc., special employee health discounts, and the list goes on.   There are a number of interesting apps now entering the market that provide such capabilities and Dossia would be wise to focus on these ISVs providing an added level of assistance to get them on-board quickly.


Walking into the briefing, expectations were quite low for what we might hear from Dossia. Their quiet, reclusive nature, lack of partners, and seemingly little progress being demonstrated to the market left one thinking that Dossia will fade over the next couple of years.  The briefing put many fears to rest.  Dossia is proceeding ahead at a careful measured pace and has accomplished much over the last year.  It is far too early to count them out.

But will Dossia ultimately succeed, will they be a force to be reckoned with will they become a key market influencer?

Still too early to tell.  The platform is stable, the API is there for third party ISVs and with Dossia representing over 8 million potential users (employees) this is a market nearly 3x the size of the most popular PHR today, that of Kaiser-Permanente – a very sizable and attractive market for most any ISV.  But without strong vocal support (marketing) by executives of its consortium members, Dossia will struggle to make its presence known, struggle to clearly articulate its value proposition and struggle to influence the market and subsequently drive market adoption among employers on behalf of their employees.

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Nurse & Baby Boy008_WebsiteOn September 14th, Children’s Hospital of Boston made a joint announcement with eClinicalWorks (eCW) whereby ambulatory practices affiliated with Children’s using eCW will be able to export patient data into “MyChildren’s.” MyChildren’s is the personal health platform (PHP) that Children’s Hospital provides for its customers and is based on Indivo, the open source PHP that was developed at Children’s and is the foundation for Dossia.  On Friday, Sept 18th, Chilmark Research had the opportunity to speak with the key people at Children’s who are behind this initiative (Dan Nigrin, CIO, Greg Young, heads up PPOC (affiliated practices) and Ken Mandl, Harvard Prof and key person behind Indivo) to gain a better understanding of what they are doing and its significance. Here’s what we learned.

Some background:

Children’s Hospital, which is affiliated with Harvard has the Children’s Hospital Informatics Program (CHIP) which developed the Indivo platform and has always been a very strong advocate of the concept of the “patient-controlled medical record.”  Their initial work, both technology and policy, led to Microsoft’s HealthVault, Google Health and Dossia, all of whom have adopted similar platform models and policies regarding consumer access and control of their personal health information (PHI).

About 3 years ago, Children’s group of affiliated ambulatory practices, PPOC, (about 75 in all) made the joint decision to go digital and adopt an EMR solution, in this case eCW in a hosted delivery model (ASP).  Today, the majority are now live with eCW and the balance, with exception of ~5 practices who have chosen not to adopt, will be live by Sept 2010.  Children’s Hospital uses Cerner as its EMR.

Children’s did a “soft” release of MyChildren’s in mid-April’09.  Little promotion to date and currently about 1200 users.  Soft launch was intentional to understand user needs and desires as well as await a larger, more aggressive launch in late 2009.  In early 2010, MyChildren’s will transition to the latest Indivo release, IndivoX.  It is also in early 2010, that data will begin flowing from eCW EMRs in affiliated practices into a patient’s MyChildren’s account.

The Offering: eCW, Cerner and MyChildren’s:

By connecting the affiliate practice EMRs to MyChildren’s a parent will be able have a more complete longitudinal record of their child.  The data elements that will flow into a MyChildre’sn record include immunization records, allergies, ambulatory lab data, meds, basic physical measurements (height, weight, BP, etc.) and problem lists. An interesting tidbit we learned during the call is that growth data is absolutely critical in evaluating the health of a child.  Thus, getting this data from the ambulatory setting is an important objective for Children’s in monitoring the long-term health of its patients.

MyChildren’s will support the creation of specific care plans based on specific diseases/conditions, e.g. asthma, that are a combination of template and physician input drawing data from the MyChildren’s platform that is specific to the patient/child.  MyChildren’s will also enable a parent to automatically create school and camp health forms.  Like the care plans, the school/camp forms will draw upon the data MyChildren’s collects from both ambulatory (eCW) and inpatient (Cerner) encounters to populate the forms which can then be printed and submitted to the requesting body.

Inpatient lab data will not be imported into MyChildren’s, which we found odd.  Children’s explained that in the inpatient setting a significant amount of lab data is generated and they did not want to overload a given patient’s account.  This may indeed be true, but can they not at least provide a subset of that data, that which is most critical to both a parent and possibly an affiliated practice?  This has come up in internal discussions and is being evaluated.

In the future, they will also be importing pathology results, images and clinical notes into a MyChildren’s account.  When asked about after visit summaries (AVSs), Children’s stated that this is another element they are considering but do not have specific plans today. They have purposely decided not to import genetic data into MyChildren’s.

One of the more interesting aspects of this announcement is their intention to use Indivo (MyChildren’s) in an HIE capacity.  Specifically, inpatient Cerner data will pass through Indivo and on out to affiliated practices and vice versa.  EMR users in either setting, inpatient or outpatient will be able to readily pull-up data within their native EMR (that is parsed through MyChildren’S) thereby minimizing disruption to existing work-flow practices.   Granted, this is not as high-powered as say a native HIE solution from someone like Axolotl or Medicity, but it does solve the immediate needs of Children’s for a very nominal cost.

The Wrap:

Besides walking the talk by supporting consumer access to and control of their PHI, Children’s Hospital is putting these processes and practices in place via MyChildren’s to support the patient-centric medical home concept which they believe will continue to gain acceptance and support among policy makers. Here in Massachusetts where healthcare costs have continued to escalate at an alarming rate, payment reform is now a top discussion topic with the medical home concept receiving significant consideration.  Children’s sees the writing on the wall and is taking a proactive approach.  Hat’s off to them.

It is also good to see how a PHP (MyChildren’ in this case) can become the nexus for care, a nexus where the patient is truly at the center, where they are in control of their PHI.  Supporting this patient-centric care model is rare.  Sure, many healthcare providers will state that they support the concept, but it is hard to find many that actually put it into practice.  Children’s Hospital of Boston, along with others such as Kaiser-Permanente, Beth Israel, Cleveland Clinic, Mayo, and even more recently New York Presbyterian are leading the way.  Question now is: How far back are the followers and how quickly will they come and join this growing and inevitable trend with more than words, but actions?

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Yesterday’s InformationWeek reported that Wal-Mart has done an extremely limited roll-out of the Dossia platform among some 20 or so employees.  Very modest beginnings for a platform that is already running well-behind schedule, at least according to the schedule they announced when they first hooked-up with Omnimedix.

Since then, that marriage ended in divorce and Dossia found a new spouse adopting the Indivo platform developed at Children’s Hospital, Boston.  While the folks at Dossia did inform me late last year that they intended to have a limited roll-out by end of 2007, and they more or less met that schedule, my idea of a limited roll-out was say a 500-1,000 minimum.  After all, the ultimate goal is to support upwards of 8.5M employees.  Thinking about it, surprised that they would even announce such a limited roll-out as they did yesterday for its size is almost embarrassing.

So Dossia, when might we see a more ambitious roll-out?

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All You Need to Know About Indivo

I’ve done a couple of posts on Indivo in the past as this is the technology platform for the massive Personal Health System initiative of the employer-led consortium, Dossia.

A paper in the registration package from the recent PCHRI event was on Indivo written by the lead researchers at the Children’s Hospital Informatics Program (CHIP). This is a well written paper about the Indivo platform; the technology and architecture, the philosophy by which it has been developed over the last decade, and some inkling as to where future development will be focused. Paper also has an excellent set of references at the end for those who want to dig deeper.

You’ll find this paper over at a very cool site – BioMed Central, a medical resource library founded on similar principles to “Open Source” providing free access to peer reviewed biomedical research. This link will take you directly to the paper, but do encourage you to look closer at BioMed Central and consider registering.

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Earlier this year, Dossia established a partnership with the Children’s Hospital Informatics Program (CHIP) at Children’s Hospital Boston to use the Indivo platform that CHIP developed. Indivo has been used in a couple of trial personal health record (PHR) applications, including one at HP for an employee flu immunization program and more recently at MIT for students using MIT’s healthcare facilities. It is also being made available to all patients at Children’s Hospital Boston. With Dossia, the Indivo team will look to expand the capabilities of this open source application to evolve beyond a PHR to becoming a personally-controlled health record infrastructure (PCHRI) system that will be the foundation for a potentially wide range of personal health applications (PHAs). Therefore, like Microsoft’s HealthVault, Dossia will not be a PHR, but a personal health platform (PHP).

At last week’s PCHRI 2007 event, Colin Evans, President of Dossia and Omid Moghadam, Strategy Director, outlined Dossia’s strategy and plans. There will be two posts on this subject. This first one which follows addresses Dossia’s “Utility Model”, architecture and governance. The second will look more broadly at Dossia’s strategy and its implications in the broader personal health market.

Employing a Utility Model
Dossia will structure itself on a utility model, providing foundational, personal health record services for the broader community, which in this case are the employers, and the employees they represent, who will participate in Dossia. As a utility, Dossia will provide a single, common infrastructure for the collection and storage of personal health information. In addition, Dossia will establish a common set of application programming interfaces (APIs) to allow various PHAs to access data for presentation to the consumer. Lastly, Dossia will create a single set of certification standards for PHAs to insure that they conform to policies and protocols regarding data use and distribution,

To become self-sustaining in the future, (currently Dossia is funded by significant sponsor contributions) one can imagine Dossia using a similar revenue model as that of a utility assessing various service fees for such activities as data collection and reconciliation (claims, labs, EMR, prescriptions, etc.), application hosting, and benchmark reporting (e.g., employer comparing their wellness incentives against the success of others within the Dossia community). This revenue model differs significantly from others in that it will not rely on advertising revenue, which is a model used by many including Microsoft and safe to assume it will be Google’s as well. Nor does the model rely on data mining, an approach used by a small fraction of PHAs, or subscription/service fees which is a more common model among PHAs.

An interesting aspect of the Dossia utility model is that the personal health data residing within the repository will not be owned by Dossia, nor will Dossia control how that data is shared – that decision will be left to the rightful data owner, the consumer, which in this case is the employee of one of the employer sponsors. The consumer will decide whom they will share their personal health information with and Dossia further states that the data will be portable, allowing the consumer to take the data with them, should they leave their employer or wish to leave the Dossia platform for any other reason. The specifics as to how this will all work remain unclear (e.g., level of granularity for data sharing or how one would receive their health data to transfer to another platform), but these are Dossia’s intentions.

Extending the personal, consumer ownership of data, the Dossia entity will not sell any of the personal health data contained within it, including de-identified data. They will leave the decision entirely up to the consumer letting them decide as to whether or not they wish to participate in any program/application (e.g., clinical trials, health surveys, medication side effect studies) that would require use of their personal health data residing within the Dossia repository.

Dossia’s Architecture
The architecture envisioned for Dossia (see figure, warning PDF) is a three-tiered model. It begins with a foundational data services layer followed by a data repository on top of which will sit a the final layer which will consist of a collection of open, standards-based APIs. These APIs will allow third party PHAs, which comprise the Dossia ecosystem, to access the data repository for subsequent retrieval and display of consumer-specific data within their application.

What is important to note here is that as a utility, Dossia’s desire is to remain a neutral provider of common services that provides current and future Dossia members the ability to choose from a wide range of PHAs depending on their specific needs. Dossia will not dictate which PHR or for that matter any other PHA to use leaving that choice to the Dossia employer sponsor. What Dossia may dictate, however, is that the PHA be Dossia certified. What that certification will look like has yet to be defined but one can reasonably assume that certification will include strict guidelines on privacy and security of health record data.

In addition to the developing a common set of APIs for PHAs at the upper layer, as a utility Dossia will also establish a single clear gateway for personal health data to be piped into the data repository. This may prove to be just as critical to the broader personal healthcare market as the APIs mentioned previously.

Providing a single data gateway to providers of data (pharmacies, physicians, payers, laboratory services, etc.) will greatly simplify the data collection process, which to date as been the bane of most PHR initiatives. The PHRs that are currently available in the market simply don’t have the scale/consumers to entice a data provider to deliver the data in a standard format that is readably usable by a PHR provider. This prevents automation of data collection and population of a consumer’s PHR leaving the consumer to input such data manually. Dossia instantly brings scale to the market through its representation of some 8.5 million consumers. This number will likely grow, clearly providing the scale that justifies a data provider’s conformance to Dossia’s data gateway standards.

Dossia Governance
Dossia’s leadership team is comprised of senior executives from a number of its founding member employers. Both Colin and Omid are on “loan” from Intel to lead the Dossia initiative and a number of other employees from Cardinal Health, Intel, Pitney Bowes and Wal-Mart play key roles as well.

Working with the Indivo team at CHIP, Dossia.org will define the services and protocols to collect personal health data from a wide range of pertinent sources and the mechanisms by which that data will be stored within the data repository. Although Dossia has yet to make any firm commitments it will likely adopt such emerging standards as the clinical document architecture (CDA) and continuity of care record (CCR) as well as future adoption of PDF Healthcare (currently being balloted by ASTM with expected release in early 2008) as Intel played a significant role in the development of PDF Healthcare.

At the API layer, Dossia intends to create a special interest group (SIG) that will define this, the most critical layer in the Dossia architecture. In a brief call I had yesterday with the Dossia representative who is leading the SIG effort, I was told that this group is still very much in the formative stages, but future representation will include Dossia employer sponsors and PHA representatives. One of the key charters for this group will be to define exactly how data will be securely and seamlessly accessed from the data repository. Dossia did state at PCHRI 2007 that they intend to use “open” APIs, with published specifications.

A utility model for Dossia makes a lot of sense. It establishes Dossia as a neutral aggregator and distributor of personal health information with no secondary agenda, unlike Microsoft and in the future Google. This will make Dossia attractive to both data providers and PHAs that may have a conflict of interest issue with other aggregator/platform providers. This also makes Dossia attractive to future employers for as a utility, it will not dictate which PHA to use, that choice is left to the employer and/or employee based on their specific needs. Finally, as a utility Dossia should be able to create a self-sustaining revenue model based on utility like services for employer participants. Similar to your electric bill being billed out at kilowatt hours, one can envision Dossia billing employers on a similar usage fee, say number of employees accessing the system per year.

There is not too much to say about the architecture. Indivo uses a common architectural model that is not too dissimilar to the one Microsoft has deployed for HealthVault. Its a widely accepted architectural model and it works. But as everyone knows, the devil is always in the details and such models, this early in development are purposely vague.

As for governance, the chief concern I have here is regarding the API layer and the SIG that will be formed to guide its development. Yes, Dossia is still in the early stages of development having only recently chosen Indivo after a falling out with its previous partner Omnimedix, but this is the most critical layer in their architectural stack and the lack of a clear charter and membership combined with the planned limited roll-out of Dossia by year-end and broader roll-out in 2008 gives one pause for concern as this has the potential to stall this roll-out do to a potential lack of functionality at the API layer.

Within the next week or so there will be a follow-on post addressing the implications of Dossia in the broader personal healthcare market including its impact on providers, payers and least we forget, the multitude of PHA providers in the market today.

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The Children’s Hospital Informatics Program (CHIP), developers of Indivo, hosted PCHRI 2007, an invitation only conference over the last two days. The event brought together about 100 leading players in the Personal Health Record (PHR) market to discuss where the market is today, what challenges lie ahead, and what we might see in the future.

Over the past year the PHR market has certainly seen a significant pick-up in activity. Microsoft rolled out HealthVault, the big employer-led Dossia initiative adopted the Indivo platform, Kaiser-Permanente released their PHR to its 8.5 million members, Aetna released a hosted PHR and let us not forget Google, who has yet to release anything but continues to generate a lot of buzz in the market. Given this backdrop, the PCHRI conference was full of updates, announcements, outlines of strategies (Dossia in particular which I’ll do a separate post on), and discussions on what is needed to move the PHR ball further forward in 2008. Following are some highlights.

Personal Health System
Discussion is moving beyond just what a PHR is to what a Personal Health System (PHS) may look like. This is being driven in large part by the actions of Microsoft and Dossia who are both looking to provide a personal health platform (PHP) upon which a wide variety of applications may sit, including PHRs. As a corollary to this, Aetna said it will allow users of its PHR to move their records/data into HealthVault or Dossia and New York Presbyterian and CapMed are currently working with Microsoft to insure interoperability between their PHRs and HealthVault.

Role of Standards
Standards are not perceived as a problem for PHRs. There are plenty out there in the market today, the PHR community simply needs to agree on one and move forward. Ah, but therein lies the trick – getting them all to agree. This point will become irrelevant as the PHP players define the standards for their platforms. And for those platforms, Open Source is not important, but Open Standards and Open APIs (application programming interfaces) are critical.

Regulations & Policies
Virtually unanimous agreement that this market is too immature for any strict, prescriptive policies or regulations. Rather, participants saw a need for a light policy framework to provide the market with the flexibility needed to try new approaches and value propositions to meet consumer needs while still providing some government oversight.

A couple of elephants remain in the room, one quite visible, the second less so. The visible elephant is privacy as this remains the number one issue for consumers. What Aetna found, however, in their focus groups is that once consumers started using the PHR, their privacy concerns diminished. Another interesting revelation is that consumers are quite willing to relinquish privacy concerns, via voluntary disclosure, if they thought that it would contribute to a greater common good. This finding came from the folks at PatientsLikeMe who stated that among their members, over 70% have volunteered information about themselves on the site that is index-able and searchable by Google. (Today’s WSJ Health Blog also released some interesting survey findings on this issue.)

Despite these positive privacy trends it was clear that the PHR industry as a whole has not done a thing to allay consumer privacy concerns and current privacy policies remain confusing, fragmented and all too often misleading. As with the comment above on standards, hopefully the future platform/system plays in the personal health market will drive a higher level of privacy policy standardization and compliance.

The invisible elephant is the lack of digital data and when it is available, delivering it to consumers in a format and context that they can readily understand and take action upon. Widespread agreement that a model that relies on the consumer to manually populate a PHR with data will not see broad adoption (ironically, this is what is most commonly found today among untethered PHRs). Therefore, automating this process is critical. SharedHealth, the Tennessee Health Information Exchange (HIE) did a demonstration project for CMS earlier this year moving large EMR data sets to a PHR. The biggest challenge (manually intensive and expensive) was converting EMR data into terms the consumer will understand within their PHR. This elephant will be in the room for quite some time as there were no easy answers presented at this conference as to how to address this issue.

Data Usage
There are quite a few stakeholders circling the PHR market hoping to get access to this potentially rich treasure trove of data. The pharmaceutical industry is looking to access this data to perform a wide variety of research tasks from identifying potential candidates for clinical trials to finding genetic markers for diseases in new drug development. Amgen stated that they have been attempting to use de-identified EMR data for oncology research but are finding it arduous and expensive. Amgen reflected on a breast cancer research program where they found that the critical data fields of interest in the EMR data sets were filled out only 20% of the time and that does not account for “dirty” data. Ultimately this was a worthless endeavor for them. Amgen sees strong potential in the PHR market for providing such data and openly stated it is willing to invest to make it happen.

And it is not only the private sector looking to get its hands on PHR data – Uncle Sam wants it as well. The Center for Disease Control (CDC) for example is interested in gaining access to provide them with a better picture of population health and bio-surveillance.

As this event was focused on Personally Controlled Health Record, there was general agreement that such data sharing was acceptable provided that the PHR solution offered sufficient granularity to allow the consumer to selectively share data (most PHRs today do not) and that it was up to the consumer to decide whether or not to share such data, not the PHR provider.

Going in the opposite direction was PatientsLikeMe. They stated that they have every intention of sharing their customers’ data with pharmaceutical companies – as it is core to their revenue/business model. They believe that pharmaceutical companies are in the best position to help those on PatientsLikeMe with new drug therapies and thus should be welcomed, not spurned. Of course, many at the event who come from the physician side of the fence looked at this idea with a jaundiced eye.

Some Final Data Points

  • Aetna’s PHR, which was released on Feb 14, 2007 now has over 800,000 users. Strongest adoption is among chronic care patients.
  • The Veteran’s Administration’s PHR now has over 500,000 users.
  • CapMed has over 600,000 of its PHR in the market today.
  • WebMD is supporting over 200 private PHR portals for payers and employers.
  • Dossia is on track with roll-out to early adopters by end of 2007.
  • Of the 39 BC/BS plans nationwide, 67% have gone live with a PHR or will do so in the near future.

There is always an afterglow coming from one of these conferences and this one is no different. Beyond the glow though, it is hard to argue that PHRs are still a technology not yet ready for prime time. This is clearly changing and quite rapidly. No longer does this market resemble Sisyphus slowly rolling a ball up a hill. This ball is starting to roll down and is picking up momentum. That’s not to say it won’t hit some speed bumps along the way, but if 2007 is any harbinger, 2008 will be an even more dynamic year for the PHR market.

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On November 26th and 27th, I’ll be attending Harvard Medical School’s meeting on Personally Controlled Health Record Infrastructure (PCHRI).  First time attending and looking forward to it.

Particularly hope to learn more about the Dossia-Indivo relationship as a couple of folks from Indivo are the chief organizers for this event and Dossia’s CEO,  Colin Evans.  Also, it will be interesting to see how thoughts and views on this sector have changed with the introduction of Microsoft’s HealthVault.

Regardless of what I may learn about Dossia, I’ll provide a summary of the event later this week so stay tuned.

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