Second HHS Report on Personalised Health Care

21 November 2008

The US Department of Health and Human Services (HSS) has published the second report from the Initiative on Personalized Health Care. This programme aims to “improve the safety, quality and effectiveness of healthcare for every patient in the US” by using genomics; key goals are to:

  1. Link Clinical and Genomic Information to Support Personalized Health Care
  2. Protect individuals from discrimination based or unauthorized use of genetic information
  3. Ensure the accuracy and clinical validity of genetic tests performed for medical application purposes
  4. Develop common policies for access to genomic databases for federally sponsored programs

The first report was produced in 2007 (see previous news), and focused on prospects and barriers for using genomic and related information to offer more individualised health care, particularly federal activities in these areas. The latest report, Personalized Health Care: Pioneers, Partnerships, Progress includes updates from private and academic health care centres where selected personalised approaches are being used in clinical practice, and commissioned papers on the opportunities and challenges for such care from different stakeholder perspectives (see press release). It also incorporates a summary of a 2008 National Summit on Personalized Healthcare held in Utah, where participants sought to create an action plan to overcome specific barriers to progress in this area.

The introduction to the report states that in coming years, as capacity to deliver evidence-based care increases and “new, molecular-based understanding of health and disease” emerges, the conjunction of the two will yield tools for improved care, and for individualised care including not only the most accurate diagnosis and safest, most effective treatment, but also individual disease risk prediction and preventative advice, and pre-symptomatic disease identification and treatment to prevent or delay clinical expression. It is envisaged that in the future patients and clinicians will have access to personal electronic health records (possibly including their genetic profile), new software tools to enable decisions about care, and opportunities to participate in a “learning health care system” by contributing data to large-scale on-going research. An increasing role for the patient to act as a decision-maker is also sought, with treatment recommendations based not only on available clinical and biological information but as on the preferences of the individuals.

The essential role of advanced information technology in this process is acknowledged, as is the lack of progress in adoption of health information technology and electronic health records (“painfully slow”), and a timescale of “years or even decades” alluded to. Whilst it is true that some early examples of personalized care are already taking place (as cited in the report), a timescale even of decades (subsequently expanded into expected progress in 5, 10, 15 and 20 years) for the introduction of a whole new approach to medicine based on a comprehensive understanding of the human genome in health and disease is perhaps overoptimistic

Emerging data from genome-wide association studies about genetic susceptibility to disease and the recent enactment of the US Genetic Information Non-discrimination Act (GINA – see previous news) are put forward as key milestones in progress towards an era of personalised health care, and the first recommendations of the Evaluation of Genomic Applications in Practice and Prevention (EGAPP - see previous news) cited as another crucial development. The central importance of translation within the scientific enterprise is noted, and the current US system of health insurance and reimbursement found inappropriate for the future practice of medicine, with alternatives including closer alignment of the work of the FDA and the Centers for Medicare & Medicaid Services proposed.

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