Tectonic shifts in the health information economy
This article summerrizes a taking shape trend in the health information landscape, where control over the management of personal health care information will shift from the traditionally stakeholders — physicians, healthcare institutions etc.— to patients-consumers, while presenting a new scale of data conveying liquidity.
In 1998, an international group of laypeople and health professionals met to envision a more patient friendly health care system - one created “through the patient’s eyes.” They agreed on a guiding principle — “Nothing about me without me" (1). As most patients receive care from many health care providers, their health data – paper and EHR-based systems – is consequently dispersed over many facilities (2) and the inevitable outcome is a fragmented system that impedes optimal care.
PHRs are "electronic application[s] through which individuals can maintain and manage their health information (and that of others for whom they are authorized) in a private, secure, and confidential environment" (3). PHR core benefits include improving information integration i.e. sharing of information among different care givers and other stakeholders promoting continuity of care hence contributing to medical error reduction and to better informed decisions, improving patient's health data validity and quality control, improving patient's active role in their own care through implementing intelligent software agents such as a disease-management tools, improving patient satisfaction etc.
PHRs have been under development since the mid to late 1990s. The Markle Foundation Connecting for Health Initiative, a public-private endeavor working toward an interoperable health information infrastructure, provides the following PHR definition: "The Personal Health Record (PHR) is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies. Individuals access their PHRs via the Internet, using state-of-the-art security and privacy controls, at any time and from any location. Family members, doctors or school nurses can see portions of a PHR when necessary and emergency room staff can retrieve vital information from it in a crisis. People can use their PHR as a communications hub: to send email to doctors, transfer information to specialists, receive test results and access online self-help tools. PHR connects each of us to the incredible potential of modern health care and gives us control over our own information" (4).
In July 2006 the American Health Information Management Association (AHIMA) demonstrated its advocacy for the empowerment of individuals to manage their healthcare by issuing a joint Position Statement for Consumers of Health Care on the Value of Personal Health Records with the American Medical Informatics Association (AMIA).
A recently published article has summarizes current experience with PHRs implementation and usage uptake (5). Currently, two types of large corporations are involved. Technology companies such as Google with 'Google Health' and Microsoft with 'HealthVault', and Fortune 100 companies in their role as employers.
Through rephrasing PHR to Personally Controlled Health Record (PCHR), the article emphasizes the completeness of the proposed patient's control over their health care data management. This is to be realized by putting the authorization key exclusively within the patient's hands, enabling him to authorize access to others, including clinical providers, family members, health care proxies, etc. On patient approval, companies, governmental and nongovernmental organizations, and other health stakeholders can create applications that connect through a programming interface to the PCHR platform (See figure 1 for a summarizing visual description of the platform model for PCHRs).
Furthermore, one of the most promising entities within the field of biomedical informatics lies in the incorporation of clinical informatics and bioinformatics. PCHR can be a substrate for anonymous population-based research based upon grouping of patients by various clinical strata. Through the PCHR interface the patient can sign up for notification of open research studies relevant to his/her health profile and even be rewarded for his participation in such studies. Moreover, patient's control will leverage higher ethical standards through the obligated inform consent intrinsically embedded in the PCHR. If the platform model proves to be successful, the largest, richest, and most up-to-date health care databases will reside on the servers of the companies providing the PCHR platform.
The article discusses several high level indecisions and potential alternative approaches with regards to the clinical research aspect of PCHR.
Another major issue raised by the article is the legal aspect of PCHR regulation as, current PCHRs providing companies are not covered entities under the Health Insurance Portability and Accountability Act (HIPAA). The article concludes that academic medical centers, federal regulators, and PCHR service providers will need to collaborate to establish protocols for recruiting subjects through PCHRs and to emphatically determine how identified and de-identified patient data will be handled.
The major technological challenge for PCHR is the combing of health data originating from multiple sources into single database with a unified, standard-based, database. Non technological impediments include the current standard labyrinth, security and confidentiality (de-identification of data), paper-based clinical data storage, current limited adoption of Electronic Health Records (EHR), accuracy of data, ownership of data, extent of shareability of data across systems and care givers, legal concerns, back-up issues in case of loss of data and funding issues and the issue of universal patient identifier that enables ready authentication of the patient across the healthcare system.
The article concludes with a clear and unambiguous statement declaring that "Just as medicine emerged stronger after Abraham Flexner’s 1910 report on medical education, our health care system can be made not only safer for patients but more agile in pursuing translational research if we recognize and help steer these shifts in the medical information economy".
Yossef Bahagon M.D.
1. Delbanco TL, Berwick DM, Boufford JI, et al. Healthcare in a land called People Power: nothing about me without me. Health Expect 2001;4:144-50.
2. McDonald CJ, Overhage JM, Dexter PR, et al. Canopy computing: using the Web in clinical practice. JAMA. 1998;280:1325–9.
3. US HHS http://www.hhs.gov/healthit/glossary.html Last accessed April 27th, 2008.
4. Markle Foundation, Connecting for Health. The Personal Health Working Group Final Report, July 1, 2003.
5. Halamka JD, Mandl KD, Tang PC. Early experiences with personal health records. J Am Med Inform Assoc 2008;15:1-7.