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Roger Clarke's 'eHealth Records'

Your Health Records: Privacy Versus Quality of Care
Panellist's Statement

Roger Clarke **

First-Draft Notes of 8 August 2007

Prepared for an event run by the Health Informatics Network at the University of Melbourne, 14 August 2007, 6:00-7:30pm

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This document is at http://www.rogerclarke.com/EC/eHlthRecs-070814.html


1. The Presumption that 'More Data is Good for Health Care' is Unjustified

The flyer for the event says that "if a patient's records were accessible wherever they were in the health system ... the benefits to patients in integrated care would be dramatic".

That statement is conventional, and seems intuitive. But it is at least unjustified, and to some extent it is simply wrong:

And treatment professionals will always take that approach, because they're human.

2. Administrators Want Lots of Data in Integrated Records

Managers of health care facilities (who are increasingly profit-oriented, and decreasingly medically trained) believe that large-scale data collection and data-intensive management are vital to the management of health care professionals, in order to drive costs out of the system.

They are also naturally interested in the automation of treatment decisions based on intensive data-holdings, as a substitute for expensive 'high-touch', judgement-based treatment.

3. Insurers Want Lots of Data in Integrated Records

Insurers have been permitted to abandon the principle of shared-risk. They want to avoid insuring the people who will make more use of health care facilities. (They may not object in principle, but they work very hard to make sure someone else insures such people). In short, they want maximum access to personal data in order to make fine-grained discriminations against the sick and the disabled.

4. Researchers Want Lots of Data in Integrated Records

Empirical researchers want every item of data about everybody (cf. Projekt Metropolit in Denmark and Sweden 1953-). They assume (and in some cases even assert) that the public interest in their statistics automatically outweighs personal values.

But health care research does not warrant 'sacred cow' status, needs to be justified, and needs to be subjected to critical assessment. For example, far too little attention is paid to the relationship between the confidence-levels associated with research conclusions, on the one hand, and the error-rates that are inherent in data collections of all kinds, on the other.

5. Administrators, Insurers and Researchers use Health Care as a Shield

It suits all three groups to sustain the myth that 'more data is good for patient care', because they can thereby avoid being seen as the primary movers and the primary beneficiaries in the great Consolidated eHealth Record Race.

6. An Integrated Record will Seriously Harm Data Quality

Health-related data consistently attracts a high level of privacy concern. For some individuals, and in some situations, and in respect of particular personal data, the concern can be very high indeed.

The 'privacy-absolutists' (including both those with in-principle concerns and persons at risk, for whom hiding is a matter of safety) want to avoid personal data finding its way into long-term records, and wandering around cyberspace, popping up who knows where, with potentially deleterious consequences for them. So perhaps 10% of the population will obscure and lie.

Some of the 80% in the middle are inclined to give up on privacy, fatalistically (and incorrectly) assuming that''they' already know everything about us anyway', or accepting the self-interested assertion about 1997 (by Sun CEO Scott McNeely) that 'privacy is dead, get over it'. But the consentless abuse of personal data by administrators, insurers and researchers is driving more of the 80% towards the privacy-absolutist position.

7. Some patients may benefit

If the 'consolidated health record' mantra were moderated, could it be more tenable?

A natural segment to consider is patients with chronic illness and/or multiple disabilities, and hence multiple carers. They are (generally, though not absolutely) much happier to trade away their privacy, because of the primacy of lower-level Maslowian needs.

Another context worth examining is the automated checking of conflicts among medications, conditions, allergies and contra-indications. The instances in which this would be likely to provide payback intersect with the chronic segment, but benefits may also arise in relation to some forms of acute condition.

Another segment is elite sportspeople, who are increasingly subject to authoritarian regimes dictated by WADA, peak bodies like the IOC and AOC, and the federations, associations and teams that run their sports. They have a strong self-interest in data security (because they're celebrities with a bi-valent relationship with the tabloid press), and in careful self-monitoring of their intake lest they fall foul of substance-abuse regulations.

Another aspect of importance is communications within health care teams. Rather than dissipating energy on health care systems that try to span vast space and long periods of time, health informatics initiatives should focus on the local and the short term. But of course that wouldn't be in the interests of administrators, insurers and researchers.

Conclusions

Discussions about health record consolidation and accessibility, and national identity schemes to facilitate them, need to move away from the vague and general, to the detailed and specific.

Administrators, insurers and researchers must fight their own battles, demonstrate their own justifications, structure their own protections for privacy, and accept constraints on their activities, rather than hiding behind the convenient mythology of 'more data is good for patient care'.


References

Miller G.A. (1957) 'The magical number seven, plus or minus two: some limits to our capacity for processing information' Psych. Rev. 63 (1956) 81-97

Sources

Clarke R. (1992) 'Balancing Benefits Against Risks in the Health Communications Network' Seminar of the Australian Medical Informatics Association, Perth, 24 October 1992

Clarke R. (2001) Research Challenges in Emergent e-Health Technologies' Panel Session, Salzburg, 22-23 June 2001, Xamax Consultancy Pty Ltd, July 2001

Clarke R. (2002) 'e-Consent: A Critical Element of Trust in e-Business' Proc. 15th Bled Electronic Commerce Conference, Bled, Slovenia, 17-19 June 2002

Clarke R. (2002) 'Consumer Consent in Electronic Health Data Exchange: Background Paper' Department of Health and Aged Care, December 2002

Clarke R. (2002) 'Consumer Consent in Electronic Health Data Exchange: Implementation Considerations' Department of Health and Aged Care, December 2002

Coiera E. & Clarke R. (2004) ''e-Consent': The Design and Implementation of Consumer Consent Mechanisms in an Electronic Environment' J. Amer. Medical Informatics Assoc. 11 , 2 (March/April 2004)


Author Affiliations

Roger Clarke is Principal of Xamax Consultancy Pty Ltd, Canberra. During the last 20 years, his focus has been on strategic and policy aspects of eBusiness, information infrastructure, and dataveillance and privacy.

He holds degrees in IS from UNSW and a doctorate from the ANU. He is a Visiting Professor in the Cyberspace Law & Policy Centre at the University of N.S.W., a Visiting Professor in the E-Commerce Programme at the University of Hong Kong, and a Visiting Professor in the Department of Computer Science at the Australian National University.

He has been active as a privacy advocate since the early 1970s, and a Board member of the Australian Privacy Foundation (APF) since its formation at the height of the Australia Card campaign in 1987. He is currently APF Chair.

In his consultancy, research and advocacy roles, he seeks applications of technology, and solutions to problems, that reflect the needs of the people affected, and that balance the various interests rather than permitting powerful institutions to impose their own world-views on less powerful consumers and citizens.



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Created: 8 August 2007 - Last Amended: 8 August 2007 by Roger Clarke - Site Last Verified: 15 February 2009
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