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Abstract

• As a result of advances in information technology, there is now a new capacity to manage, interpret and apply data for the benefit not only of individual patients but of the population as a whole.
  
• Population health information systems are currently inadequate to meet the needs of disease control. In a rapidly changing world, effective public health action requires timely and efficient data about what is happening in the whole population.
  
• As the national effort to harness information technology to the needs of individual patient care begins, it is desirable that the electronic patient record also becomes the building block for public health research and monitoring.
  
• Individual healthcare and population healthcare should be two sides of the one coin. Ownership, privacy and access to the contents of the electronic health record should now be addressed in the context that disease control in the whole population will increasingly depend upon an efficient "real time" information system.

But control of disease in the population as a whole requires more than individual clinical action. Last¹ has emphasised that the systematic control of any disease requires

• a consensus that a particular disease problem exists;

• an understanding of its cause;

• the ability to control its cause;

• a belief that the problem matters; and

• the political will to control it.

Good information systems are essential to support all of these requirements. The relevance of information to disease control is well illustrated by the contrast in management of two communicable disease groups, HIV and respiratory infections.

HIV incidence rates are declining in Australia² at a time when those in other nations, particularly African countries,³ are rising. This apparent success is believed to be at least partly attributable to a widely supported national control program that was begun in 1989.⁴ The program promoted broad community understanding of the nature of the disease and a shared commitment by stakeholders and governments to contain the problem. Unlikely coalitions were formed between scientists, risk groups and community representatives, and the entire community was involved in approaches that were pragmatic as well as innovative. As the epidemic progressed, research focused not only on the behaviour of the virus, but also on the behaviour of the humans who transmitted it.

A central ingredient of the HIV public health strategy was the development of an excellent information system at a time when information about other diseases was (and continues to be) in disarray. The data system developed by the National Centre for HIV Epidemiology and Clinical Research helped the nation to view the HIV epidemic as a population problem rather than an individual issue, and enabled the public health community to monitor its progress, and modulate the public health response accordingly.

In stark contrast, infections of the respiratory tract, which dominate the clinical experience of primary care practitioners everywhere⁵ and cause extensive morbidity and absenteeism, are not matched by any systematic national effort to contain them. Perhaps, as they now rarely cause death, we have become complacent about them. Yet, on average, all Australians experience two to three acute respiratory episodes per year and in early childhood the average is five to eight. Apart from the misery they cause, these infections result in widespread misuse of antibiotics and the serious threat of antibiotic ineffectiveness in the longer term.⁶

It is remarkable that in this field Australia has no public health strategy, no national commitment to the problem, inadequate preventive effort, and no program of either social or biological research. Common respiratory infections are left to patients, clinicians and pharmacists, despite the magnitude of the problem and the negative impact of antibiotic abuse. We tolerate a level of morbidity and misapplication of resources to respiratory infections that does not make public health sense. We collect no systematic information about the problem, and can only guess at its cost to the community. The lack of available information means that the public health perspective is not addressed.

Information technology

Australian health ministers have recently agreed to establish a national health information network built on electronic health records that, through data linkage, can enhance the quality of individual patient care.⁷ For individual clinical care, which often involves many agencies and professionals, linkage of electronic records is essential to avoid duplication and to ensure that an individual's medical history is accessible and complete wherever the person presents for care (see Box). Because of modern transport and human mobility, fragments of a patient's history may be scattered in many places. Modern technology now permits linkage of data that are "warehoused" in multiple, geographically dispersed electronic sites.

At this early developmental stage it is essential that the new system be designed to serve the needs not only of individual patients and their clinicians, but also of organisations concerned with public health monitoring, research and administration. The personal electronic health record, however it is stored and accessed, should also be the building block for "real time" public health surveillance.

Improved efficiency of personal clinical care and improved management of public health both require the same data and should become two sides of the one coin. When a patient presents for care by a general practitioner for a respiratory infection or a manifestation of HIV, that information should also automatically become part of national public health monitoring activity. And when the laboratory reports to the GP that the respiratory infection is, or is not, a new strain of influenza that fact should, as well as informing the clinician instantly, feed into a national database that informs public health action.

Ownership, privacy and access

We need to break out of the mentality that sees medical records as being "owned" and controlled by doctors or hospitals. When a patient contracts for medical care from a doctor, the record that is prepared is paid for jointly by the patient and the community. They, jointly, should be the owners and controllers of the electronic record. Because elements of individual experience are pertinent to the health of the whole community, and because the vast majority of healthcare costs are met by the community, it is important that individual experiences be aggregated to inform public health action.

Privacy and confidentiality must be protected and respected, but so also must public good. One can not be allowed to drown out the other.

Access to an individual patient record should be controlled by the patient using a unique identifier, such as a thumbprint. An individual's records could be linked by Medicare number with repositories of individual data stored in multiple data warehouses that are themselves linked by the Internet. Through the use of a thumbprint and an access command, patients could authorise different healthcare providers to access different parts of their medical record. While a GP or medical specialist might be given access to the entire record, pharmacists might simply be given access to medication records. Mechanisms to ensure that access to identifiable data is precisely limited and carefully monitored should be part of the system specification.

Aggregation of individual records

If analysis of de-identified data revealed new community threats, access to the identification of individuals would be required in the interests of those individuals and of the public. In these circumstances, access protocols would be needed, backed up by audit trails, the right of redress for consumers in the event of misuse, and legal protection for public health practitioners who operate within carefully defined parameters.

There are thoroughly reasonable concerns that in the process of aggregation privacy and confidentiality might be compromised. These concerns would need to be addressed in system design. Nevertheless, few systems are absolutely foolproof, and the design would need to include audit trails and monitoring systems to ensure that abuse could be traced and dealt with. Imperfection in this area has not prevented the banking industry from capitalising on the benefits of the new technology, and it should not justify inaction in the sphere of healthcare.

Conclusion

Acknowledgements

References

1. Last, J. Fouling and cleansing our nest: human-induced ecological determinants of infectious disease. Perspect Hum Biol 1999; 4: 145-147.
2. Law MG, Li Y, McDonald AM, et al. Estimating the population impact in Australia of improved antiretroviral treatment for HIV infection. AIDS 2000; 14: 197-201.
3. Ziegler JB, Ffrench RA. XIII International AIDS Conference, Durban, 9-14 July, 2000 [conference report]. Med J Aust 2000; 173: 572-574.
4. Commonwealth of Australia. AIDS. A time to care: a time to act. Towards a strategy for Australians. Canberra: AGPS, 1988.
5. Douglas RM. Respiratory tract infections as a public health challenge. Clin Infect Dis 1999; 28: 192-194.
6. Schwartz, B. Preventing the spread of antimicrobial resistance among bacterial respiratory pathogens in industrialized countries: the case for judicious antimicrobial use. Clin Infect Dis 1999; 28: 211-218.
7. National Electronic Health Records Taskforce. A health information network for Australia. Canberra: Commonwealth of Australia, 2000.

Authors' details

Reprints will not be available from the author.
Correspondence: Professor R M Douglas, National Centre for Epidemiology and Population Health, Australian National University, Canberra, ACT 0200.
Bob.DouglasATanu.edu.au

©MJA 2001