The Dataspine Debate - What are the Implications in other Healthcare Systems?

The following set of links and broadcasts have been provided by Dr. Tracy Monk and comprise a very interesting and thought provoking collection of thoughts on data protection and privacy issues evolving out of the debate that is taking place in the UK at present. Your comments and thoughts on these issues are welcome:

UK

• BBC radio December 18, 2006 Ross Anderson - Chair of the Foundation for Information Policy Research, Professor of Security Engineering at Cambridge University and one of the founder members of TheBigOptOut.org - went head-to-head with the recently-resigned Lord Warner. Listen by clicking here (Real Player - Please ignore the navigation message, Real Player will appear)
• NHS Headed for the Rocks. The NHS computer project is costly and dangerous. Only one man can alter its course. Read the Guardian commentary
• Interesting web site - NHSConfidentiality.org

USA

• This is an ACP video about the patient driven Health Record in the US. A 45 minute video clip in either Windows Media or Real Player format. Click here to be directed to the program. As I understand it, a separate patient generated core data set will be created under patient control and linked to other tools and potentially linked to the physician's office based EMR. Data will be pushed out and shared at the patient's request. There are some interesting questions from the media at the end of the clip.
• In 2006, Harvard Medical School sponsored an event on Personally Controlled Health Records Infrastructure (PCHRI) - Quote: "Patients should be at the center of the healthcare universe. Personal Health Records are an integral part of the national debate on healthcare reform. But are patients' rights being considered in the move towards an interconnected health system?"

Som further thoughts from Dr. Monk:

The good:

• Patient empowerment sounds appealing.
• Huge potential for benefits in IT implementation especially labs, meds and good on-line info available at point of care.

The bad:

• Huge expenditures . . . have the gains panned out as hoped?
• Has there been a failure to focus on where the value is added with the technology?
• Database stewardship and privacy concerns continue to grow.
• Has there been a failure to grasp that some data is more sensitive than others?

The ugly?

• What are the thoughts of others on the strengths and weaknesses highlighted in these snippets of UK USA\experience and lessons we could learn here?

To add your thoughts or comments, click on the 'Comments' link below.

Comments

[Alan Brookstone]

As a further development regarding the use of Personal Health Records, the following article was published in the San Francisco Chronicle. Privacy is definitely becoming an issue in the US setting.

Companies may claim to respect your privacy. For example, a personal health records site may sell marketers the ability to advertise to diabetics, and you may be one of them. When you go to your personal record, you will see ads, discount coupons and articles targeted to diabetics. The marketers who pay for them will not know your name -- or they won't until you make a common mistake. To obtain your identity, advertisers will try to entice you to click onto their Web sites. Once there, your personal information may end up anywhere. One click can result in an irretrievable revelation of your medical status to another company that profits by reselling personal data.

Physicians may not be able to compete with the barrage of highly-tailored advertising "advice." Advertising messages are likely to be more frequent and more personalized than instructions from professional caregivers. Consumers are on the Web every day, but they see their health professional infrequently. The limited face time between physician and patient may not allow the physician much of an opportunity to counteract the tailored ads and articles written to promote particular products. Objective medical advice may be overwhelmed by pure marketing.

Link: The negative side to Personal Health Records.

[David Chan]

The scenario painted in this article applies not only to personal health records systems (PHR), but also to any centralized data repository (ASP based EMR, pharmanet, pathnet etc..). That's why there is a real distinction between a PHR which is controlled and owned by patients themselves and one which is essentially a portal view of EMR data owned by a provider or government agency. In terms of cost of implentation, the Open Source approach, and the distributive nature of the (PHR) database should have an ecological advantage over the proprietary and profit driven systems.

The point of all this is the central question: is PHR good for our patients' health? If the answer is YES then we should do it, and we should do it with the most cost-effective solution.

David