Introduction
One of the most interesting and promising uses of the Internet in the health care arena is the prospect of broad adoption and use of one of the many available sources of applications/portals/websites for storing, managing, sharing and using personal health information, i.e. Personal Health Records or PHR. Internet juggernauts Google and Microsoft in addition to several others have launched feature rich Internet portals that allow individuals to collect manage and use their personal health information by and health care professionals. These sites go way beyond a static record file and are so much more than just repositories for historical medical data. The goal of these applications is to provide a comprehensive set of tools and features to improve users’ quality of life in addition keeping an information trail of medical history. And in the case of Microsoft and Google in particular, these sites, for now, are free or inexpensive to personal users.
Four Selected Providers
Microsoft’s Health Vault (free)
HealthVault is an Internet application website offered by Microsoft for storing and maintaining and sharing health and fitness information. The site was launched in October 2007 and is located on- line at http://www.healthvault.com. The site is intended to not only provide access and value to the individuals maintaining the records but also to health care service provider professionals at the information owners discretion and direction.
Google Health (free)
Google Health, http://health.google.com, provides an on-line web portal that allows one to organize in one place, all their health information. There are tools and features that assist in assembling medical records from doctors, hospital and pharmacies. Additionally there are tools to allow sharing of information with family members, physicians or other caregivers.
Dossia (Available to qualifying members only)
Dossia is a Web-based application for storing and managing personal health records (PHR). Unlike Google Health and Health Vault, Dossia, is not available to the public at large. Dossia is the product offering of an independent, non-profit organization known as the Dossia Founders Group.
Users have to be qualified. Presently, Dossia use is only offered only to employees, dependents and retirees of AT&T, Applied Materials, BP America, Inc., Intel Corporation, Pitney Bowes, Cardinal Health, Sanofi-Aventis and Wal-Mart, the Dossia group's founding companies.
Users have the ability to aggregate medical data, claims information from insurance companies and also pharmacy records. Dossia records are stored in a private, encrypted electronic health record hosted in a modified open-source database called “Indivo” that can be accessed over the Internet using a secure connection.
MyHealthArchive Ultimate (modest subscription fee)
MyHealthArchive is a subscription based web portal PHR application. For $9.98 per month, subscribers get access to what the developers call a “revolutionary tool which gives patients the power to collect their own health information and then access it using a secured website, anytime, anywhere in the world.” The application facilitates managing health and wellness for the customer.
Features
The applications currently available have an impressive array of features and benefits already and we can only expect that over time the applications will improve in terms of usability and functionality.In terms of current features below is a partial listing:
· Comprehensive medical record aggregation
· User configurable presentation of the user interface
· Secure access
· Control over with whom data will be shared
· Accessibility over the Internet
· Guided wizards and or comprehensive user help information
· Print, email or fax all or parts of records
· Tools to help plan visits to physicians or other care providers
· Wellness information, preventative advice and health information libraries
· Personal health goal planning, calendars and progress tracking
· Interfaces with biometric tools such as glucose testers, heart rate monitors and other fitness products
· Tools for managing medication regimens
Interoperability
One of the most poignant and problematic issues in health care today is the interoperability of the myriad of diverse systems in use by all of the stakeholders in the heath care arena that optimally will share data. Because there is and likely will continue to be a broad array of health care applications for managing health record information, the data formats, document taxonomies, networking protocols and data interchange formats will continue to be complex and significant issues. The notion of “one source of truth” for a patient’s medical information and history is likely a distant if ever achievable goal. Much data will be shared undoubtedly. The risk of problems as a result of data being passed from one system to another is significant and much effort will continue to be expended to insure the accuracy of the data will be required for the foreseeable future.
Societal Benefits
In addition to the significant, obvious and exciting benefits to be gleaned at a personal level from the broad adoption and deployment of Personal Health Information (PHI) systems, there are also potentially spectacular things that can also be accomplished in the area of public health management if scrubbed (meaning concealing or protecting the privacy rights and concerns of the individuals) PHI data can be aggregated for study, analysis, data mining and other use by public health management professionals and medical researchers. The potential benefits and advances that can be made as a result of this type of a data source being made available cannot be underestimated – it will be game changing in terms of the strides that can be made in managing health concerns at a societal level.
Barriers to Broad Adpotion
While the potential benefits to individuals and to society as a whole are legion, there remain many barriers and obstacles to achieving broad adoption of PHR/PHI systems. Some of those include:
· Lack of time
o Collecting and managing the amount of data that will constitute the complete comprehensive health record for an individual or a family will be a formidable task. Time is the enemy in modern life. The demands on our time are already limiting in terms of what we can accomplish in our lives – one more – enormous task will overwhelm most. Likely, the majority of people will attempt to collect and manage only the information that they deem most important for the present level of concern about health issues.
· Fear of security and privacy issues
o Many people, with good reason, will be suspicions of any on-line, public network, aggregation of PHI information especially when the service is provided at no direct charge to the individual. This will cause many to not participate voluntarily.
· Complexity
o This may be partially a generational issue. Many people will not find the on-line applications user friendly, intuitive or understandable.
· Data input errors
o Problems with data and or functionality with the system(s) may lead some users to not use or to stop using the systems. Especially in the case where a data or system error leads to a significant personal problem.
· Terminology
o Medical terminology and medical descriptions can be incomprehensible or too challenging for some people. A user friendly, “lingua franca” may not be achievable. If people don’t find the information ineligible or meaningful their rate of adoption and perception of value will be much lower.
Risks
In addition to the visceral apprehension expressed by some, there are real risks in putting sensitive personal information into a data repository that is accessible from the public network. While all of the providers are cognizant of the risks, have engineered to minimize them and purport to have them in hand and well managed[i], it is well known that risk of human or machine error and or accidental or intentional disclosure cannot be completely eliminated. While HIPPA and other compliance rules may not apply to all of the potential players in this space, there are those potential participants, i.e. health care service providers that have legitimate potential liabilities that have to be assumed, managed or still eliminated. Then there are all of the usual systemic risks that come as a result of using electronic data automation. Besides unauthorized access and inappropriate disclosure, loss of data by error, system failure or break down, corruption of data, and logic errors are all potential risks and problems that come with any electronic data strategy.
Future
The promise and potential value of personal health record systems is great. The real value and the tremendous benefits are yet to be realized and but the enormous potential of a feature rich database application with this level of detail is truly exciting. There is much work to be done as of yet and the real keys to achieving a tipping point in terms of ubiquitous use and adoption is yet to be fully understood and articulated. As is the case with clinical setting electronic record systems, part of the barrier is the labor and time required to create the records. Just as this aspect of EMR and EHR systems needs to be improved it is also true of PHR /PHI systems. Ease of access and data input methodologies are improving continuously and have been enhanced and improved recently by advances made in the mobile computing arena.
[i] Google’s claims “[Google]… stores your information securely and privately, but you always control how it's used. We will never sell your data. You are in control. You choose what you want to share and what you want to keep private. View our privacy policy to learn more.”
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