Comment on the Federal Strategic Plan to Reduce Health IT Disparities - An Update

As in the initial Federal HIT Strategic Plan, the need for health information infrastructures to resolve the fragmentation of the U.S. health care system has not been adequately addressed in the Plan to Reduce Health IT Disparities available at http://www.healthit.gov/buzz-blog/from-the-onc-desk/federal-strategic-plan-disparities/  .  My comments published on May 6 are still relevant on the strategy to reduce health disparities: (See http://eresearchcollaboratory.blogspot.com/2011/05/commentary-on-federal-health.html ) Individual patient empowerment and engagement in the system especially requires attention to the creation of a unique individual digital identity for health care, education for multilingual health literacy, and open access to health information and scientific research.  Moving forward without infrastructures required for a patient-centered system and outreach to under-served populations will result in significant waste in funded efforts as well as loss of credibility and trust at a critical time in health care system reform.

Central to individual empowerment is the assurance of an individual digital identity in the health care services ecosystem. (See the Analysis of Unique Patient Identifier Options prepared for the Department of Health and Human Services in 1997: http://www.ncvhs.hhs.gov/app0.htm)  While the individual patient is the focus of U.S. health care system reform efforts, there is no credible plan to provide a unique digital identity to every patient.   The National Strategy for Trusted Identities in Cyberspace published in April, 2011, (See http://www.whitehouse.gov/sites/default/files/rss_viewer/NSTICstrategy_041511.pdf ) “recognizes that trusted digital identity, authentication and authorization processes are one part of layered security. Improvements in identification and authentication are critical to attaining a trusted online environment...” (page 8).  While recognition of the critical importance of individual digital identities represents an important step, the proposed system calls for complex roles to be implemented by multiple actors in both public and private sectors. The federal government plays a significant role in the early stages of the initiative, but it is expected that new and sustainable  business models will be developed for each of the service provider roles of the system (page 37) so that the identity ecosystem will become a self- sustaining market place.

The U.S. strategy for digital identities embodies the same errors as federal policies to promote the Nation-wide Health Information Network (NHIN) for health information exchange.  A reliable and valid digital identity cannot be the output of complex private sector market dynamics.  This policy principle virtually assures that there will not be universal access to reliable digital identity, and that the U.S. model will not be interoperable with ID models of other countries.  The consequences of this stance for exclusion of underserved populations should not be underestimated.  Moreover, a market supporting for-profit digital ID roles would be a fertile context for medical and administrative error, fraud and ID theft.

The lack of a unique patient identifier also has serious consequences for patient safety as the population grows and becomes more linguistically diverse and physically mobile - both nationally and internationally.  U.S. patients are generally identified using an internally derived identifier created by a care provider, while between systems, “fuzzy matching”  is frequently used to generate lists of patients with similar names and demographic profiles for evaluation as to the “best fit” match. (See http://www.corp.att.com/healthcare/docs/mpi.pdf for an example.)  This approach certainly will incur rising costs and compromise patient safety as more diverse and multilingual health care systems become globally interconnected. (See http://gpii.info./news.php for some relevant research and publications. See also the American College of Pathologists: http://www.cap.org/apps/cap.portal?_nfpb=true&cntvwrPtlt_actionOverride=%2Fportlets%2FcontentViewer%2Fshow&_windowLabel=cntvwrPtlt&cntvwrPtlt{actionForm.contentReference}=cap_today%2F1109%2F1109j_national_id.html&_state=maximized&_pageLabel=cntvwr  , and an HIMSS White Paper (2009) on Patient Identity Integrity at http://www.himss.org/content/files/PrivacySecurity/PIIWhitePaper.pdf  ) 

In the United States, approximately 98,000 people die because of medical malpractice during hospitalization. 13% of the overall number of malpractices in surgery and 67% of errors in conjunction with blood transfusions can be traced back to erroneous patient identification. Source: 

Joint Commission International Center for Patient Safety (Eds.): Technology in
Patient Safety - Using Identification Bands to Reduce Patient Identification Errors, in:
Joint Commission Perspectives on Patient Safety, 5, 2005, pp. 1-10. (See page 2 at http://ehealth.iwi.unisg.ch/fileadmin/hne/downloads/Mettler__Fitterer__Rohner__Strategies_for_a_Systematical_Patient_Identification.pdf )

Examples of strategies for unique identification in other countries include the British NHS unique patient identifier, (See http://www.connectingforhealth.nhs.uk/systemsandservices/nhsnumber/) and the Indian “Aadhaar”,  a 12-digit unique number which the Unique Identification Authority of India (UIDAI) will issue for all residents. The number will be stored in a centralized database and linked to the basic demographics and biometric information – photograph, ten fingerprints and iris – of each individual.   The Indian “Aadhaar” is also considered a tool to combat corruption – in particular by improving the ability to extend services to the most vulnerable citizens. (See an article in Le Nouvel Observateur (Sept. 9, 2011) at  http://tempsreel.nouvelobs.com/actualite/economie/20110909.OBS0074/l-identite-biometrique-arme-anticorruption-des-indiens.html ;

see also an  interesting initiative implemented in the U.S. by the NYU Langone Medical Center at http://www.computerworld.com/s/article/9217678/Hospital_turns_to_palm_reading_to_ID_patients )

The U.S. strategy for patient empowerment and engagement should include the creation of a unique biometric patient identifier to be offered on a voluntary basis to all citizens. Similar to the Indian Aadhaar, this identifier would not be mandated for citizens, but health care service providers could require it of those seeking their services.  

  

The successful pursuit of goals for individual patient empowerment within a learning health system depends upon the public infrastructures for digital identity and health information exchange – as well as health literacy interventions to improve individual skills.  Some research suggests that only one in ten adults in the U.S. may possess the knowledge and skills required to perform at a high level of health literacy.  Population health literacy is prerequisite to individual empowerment as well as to creation of a learning health system – particularly in the complex, fragmented, and increasingly multilingual and multicultural U.S. context. (See http://www.hsph.harvard.edu/healthliteracy/research/ for more resources.)

The national capacity for innovation and research requires infrastructures developed as a public good as sustained public investments in health sciences and research contribute to the foundation for a learning health care system. An important aspect of learning systems is open access to information – including data and scientific publications.  Some important steps have been taken in the U.S. system to improve such access to federally funded research, such as the National Institutes of Health Public Access Policy applicable to any manuscript reporting research funded by the NIH - accepted for peer-reviewed publication on or after April 7, 2008.  “To help advance science and improve human health, the policy requires that these papers are accessible to the public on PubMed Central no later than 12  months after publication.” (See http://publicaccess.nih.gov/)  While this policy represents progress toward the goal of open access to scientific publications, the delay of 12 months allowed for compliance significantly reduces its effectiveness. Lack of open access to health information and research hinders patient empowerment as well as development of a learning health system.

The  Latin-American and Caribbean Center on Health Sciences Information (Bireme) illustrates a multilingual (Spanish, Portuguese and English) regional model for open access to health information and publications available through the Virtual Health Library.  (The model and methodologies for development of this library are published in the VHL Guide 2011 available at  http://guiabvs2011.bvsalud.org/en/presentation/.) 

The U.S. should develop policies to promote open access to health information and research – taking into account the increasing linguistic and cultural diversity of the nation’s population as well as the globalization of health information systems.