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Data protection in a digital age
Editorial
Science Photo Library
The long and short of dementia care in England
For Living well with dementia: a National Dementia Strategy see http://www.dh.gov.uk/en/ Publicationsandstatistics/ Publications/PublicationsPolicy AndGuidance/DH_094058 For more on dementia care in England see Editorial Lancet 2008; 372: 177 For more on dementia care in England see Lancet Neurol 2008; 7: 663
Living well with dementia, England’s National Dementia Strategy launched by Health Secretary Alan Johnson on Feb 3, seeks to create an aura of leadership and confidence. The 102-page document boasts no fewer than 17 specific objectives to improve care for people with Alzheimer’s disease and other forms of dementia. £150 million is to be spent over the next 2 years, but there is mention of saving some £1 billion over 10 years if care can be provided more efficiently. The strategy contrives both to please and disappoint. As flagged at the time of the consultation in 2008, for example, general practitioners will be trained to identify early signs of dementia, and memory clinics established across the country to diagnose dementia and provide support to patients and carers. Yet the evidence base is narrow—the published evaluation of the Croydon memory clinic pioneered by Sube Banerjee, co-leader of the strategy, involved just 290 patients followed up for 6 months. Has sufficient work been done to justify extension of this
system nationwide? More research is desperately needed across the whole spectrum of knowledge about dementia, from basic mechanisms of disease to models of patient care. In truth, the National Dementia Strategy is long on aspiration and short on detail. It is commendable to see recognition of the long-term threat that dementia poses not only to health and social-care systems but also to society as a whole, that advice has been sought from a broad constituency, and that areas needing urgent action have been identified. In the short term, though, answers are still awaited on specific questions, such as the use of antipsychotic drugs in care. Longer term, serious doubts will remain about the health and social-care systems’ ability to support people with dementia in view of the competing demands of other chronic diseases, together with background financial constraints. To be judged a success, the strategy must lead to a continuing process of evidence-based change—nothing less than a revolution in health and social care. ■ The Lancet
Data protection in a digital age
For the IOM report see http:// www.iom.edu/CMS/3740/ 43729/61796.aspx
518
The USA’s current provisions for protecting the privacy of personally identifiable patients’ data are falling short, according to a report published by the Institute of Medicine (IOM) on Feb 4. The Health Insurance Portability and Accountability Act’s Privacy Rule (HIPAA Privacy Rule) regulates what uses and disclosures of personal information are permitted by health plans and health-care providers for research purposes. A key aim of the Rule is to protect patients’ privacy while enabling the flow of health information to aid research and care. However, the IOM report found that the Rule is failing on both counts. It lacks clarity, is frequently misinterpreted, often fails to protect patient privacy, and impedes research, say the authors. The IOM recommends that the Department of Health and Human Services (HHS) develops a completely new framework for protecting privacy. The new framework would facilitate greater use of anonymous data and include legal sanctions to prohibit unauthorised identification. If policy makers choose to keep HIPAA, then the IOM calls on HHS to make several revisions to the Rule
to reduce misinterpretation and improve the usefulness of data sources for research. These revisions include the promotion of best practices for privacy protection in research and the development of guidance that clearly states that individuals can authorise use of personally identifiable data for future research. As electronic health records become the norm (President Barack Obama plans to make all medical records digital within 5 years), the potential for security breaches is likely to increase. The IOM report is therefore timely. However, it is an uncertain time for the new administration. Obama’s nominee to head HHS, Tom Daschle, has withdrawn, delaying the selection process. Whoever does get the position will have to oversee the work of major federal health agencies and tackle an expensive reform of the US health-care system in difficult economic times. In reality then, the HHS might find it easier to reform the HIPAA Privacy Rule than to start from scratch. But it must make the IOM’s recommended revisions to HIPAA, at the very least, to protect patients’ privacy and the nation’s research enterprise. ■ The Lancet www.thelancet.com Vol 373 February 14, 2009
Science Photo Library
The long and short of dementia care in England
For Living well with dementia: a National Dementia Strategy see http://www.dh.gov.uk/en/ Publicationsandstatistics/ Publications/PublicationsPolicy AndGuidance/DH_094058 For more on dementia care in England see Editorial Lancet 2008; 372: 177 For more on dementia care in England see Lancet Neurol 2008; 7: 663
Living well with dementia, England’s National Dementia Strategy launched by Health Secretary Alan Johnson on Feb 3, seeks to create an aura of leadership and confidence. The 102-page document boasts no fewer than 17 specific objectives to improve care for people with Alzheimer’s disease and other forms of dementia. £150 million is to be spent over the next 2 years, but there is mention of saving some £1 billion over 10 years if care can be provided more efficiently. The strategy contrives both to please and disappoint. As flagged at the time of the consultation in 2008, for example, general practitioners will be trained to identify early signs of dementia, and memory clinics established across the country to diagnose dementia and provide support to patients and carers. Yet the evidence base is narrow—the published evaluation of the Croydon memory clinic pioneered by Sube Banerjee, co-leader of the strategy, involved just 290 patients followed up for 6 months. Has sufficient work been done to justify extension of this
system nationwide? More research is desperately needed across the whole spectrum of knowledge about dementia, from basic mechanisms of disease to models of patient care. In truth, the National Dementia Strategy is long on aspiration and short on detail. It is commendable to see recognition of the long-term threat that dementia poses not only to health and social-care systems but also to society as a whole, that advice has been sought from a broad constituency, and that areas needing urgent action have been identified. In the short term, though, answers are still awaited on specific questions, such as the use of antipsychotic drugs in care. Longer term, serious doubts will remain about the health and social-care systems’ ability to support people with dementia in view of the competing demands of other chronic diseases, together with background financial constraints. To be judged a success, the strategy must lead to a continuing process of evidence-based change—nothing less than a revolution in health and social care. ■ The Lancet
Data protection in a digital age
For the IOM report see http:// www.iom.edu/CMS/3740/ 43729/61796.aspx
518
The USA’s current provisions for protecting the privacy of personally identifiable patients’ data are falling short, according to a report published by the Institute of Medicine (IOM) on Feb 4. The Health Insurance Portability and Accountability Act’s Privacy Rule (HIPAA Privacy Rule) regulates what uses and disclosures of personal information are permitted by health plans and health-care providers for research purposes. A key aim of the Rule is to protect patients’ privacy while enabling the flow of health information to aid research and care. However, the IOM report found that the Rule is failing on both counts. It lacks clarity, is frequently misinterpreted, often fails to protect patient privacy, and impedes research, say the authors. The IOM recommends that the Department of Health and Human Services (HHS) develops a completely new framework for protecting privacy. The new framework would facilitate greater use of anonymous data and include legal sanctions to prohibit unauthorised identification. If policy makers choose to keep HIPAA, then the IOM calls on HHS to make several revisions to the Rule
to reduce misinterpretation and improve the usefulness of data sources for research. These revisions include the promotion of best practices for privacy protection in research and the development of guidance that clearly states that individuals can authorise use of personally identifiable data for future research. As electronic health records become the norm (President Barack Obama plans to make all medical records digital within 5 years), the potential for security breaches is likely to increase. The IOM report is therefore timely. However, it is an uncertain time for the new administration. Obama’s nominee to head HHS, Tom Daschle, has withdrawn, delaying the selection process. Whoever does get the position will have to oversee the work of major federal health agencies and tackle an expensive reform of the US health-care system in difficult economic times. In reality then, the HHS might find it easier to reform the HIPAA Privacy Rule than to start from scratch. But it must make the IOM’s recommended revisions to HIPAA, at the very least, to protect patients’ privacy and the nation’s research enterprise. ■ The Lancet www.thelancet.com Vol 373 February 14, 2009