APRIL,Edition # 24, 2001

Imagine that you are a progressive, young Australian company engaging in what has been described as the ultimate growth market for the new millenium....the knowledge market.
Imagine further that the knowledge databases that you associate with are mostly medical, some of which may have a sensitivity in respect of privacy.
Assuming that you were ethical and had a genuine wish to do what is right, would it not be a sound objective to be associated with the development of privacy legislation and be part of the outcome?
Health Communications Network (HCN) is such a company that has specialised in knowledge databases, and has successfully built alliances with a large number of high profile organisations.
It was also one of the few companies to have a representative on the NSW Privacy Committee, which recently wound up, after the delivery of its recommendations to the NSW Health Minister on December 30th, 2000.
One of its key recommendations was that separate and specific legislation entitled the "Health Records and Information Privacy Act" be introduced.
Armed with the basics of this proposed legislation, would you not feel secure in the collection and use of data that may be sensitive, because you instituted standards that went beyond the minimum proposed standards required?
Of course you would!
Imagine then, the horror of waking up one morning to find yourself being used as a political football, and being embroiled in a row over privacy.
With the usual distortions introduced and reported by wide areas of the media, truth became the first casualty, and HCN share price dropped from around 80 cents to 49 cents.
Neither of the public critics (Jenny Macklin, Shadow Minister for Health and Kerryn Phelps, president of the Australian Medical Association(AMA)) checked with HCN as to the accuracy of their claims, forcing the company to go into damage control.
HCN is currently in discussion with the Privacy Commissioner, Michael Crompton and with the AMA, on their own initiative.
We have no doubt that a statement will eventuate righting the recent wrongs.
Why was it necessary in the first place?
That does not seem to matter as long as there is political point scoring and sensational reportage to sell newspapers.
It is this precarious world that pharmacists are entering, because privacy legislation will become enforceable by the end of this year.
The lessons are worth learning.

To create a little balance for the HCN story, we asked them what they were actually engaged in and to give their version of the events.
They gave us the following response:

About GPRN General Practice Research Network
- rationale and future outcomes

"HCN's General Practice Research Network (GPRN) comprises around 170 GPs across Australia, who are providing aggregated and de-identified data to help improve clinical practice.
Background to the General Practice Research Network (GPRN)
The GPRN was established in August 2000.
HCN came up with the initiative to assist clinical practice by aggregating data collected by doctors using its Medical Director patient management software.

Research includes:
*Assessing whether decision support systems such as clinical guidelines and electronic prompts improve prescribing habits and management of patients.
*Improving the diagnosis and management of a range of health problems (eg. depression, bacterial infections) under the framework of the quality use of medicines.

Access to the research database is provided free of charge to some university groups and research organisations to assist their public health research.
For other organizations, HCN would provide a research facility on a 'fee for service' basis to provide reports to specific briefs to recover the costs of running the program.
For example, pharmaceutical manufacturers have a responsibility to ensure the appropriate prescribing of their products by GPs. The GPRN provides a valuable source of data in monitoring general dosing and prescribing patterns.

Putting the record straight:
Given recent media coverage, there appears to be two key issues of misunderstanding that require clarification - protection of privacy through the de-identification of medical records and ways in which the data is used.

1. De-Identification of medical records
HCN takes patient privacy seriously.
If we didn't, we wouldn't be in the e-health business.
The GPRN employs thorough and professional practices that protect the privacy of all participating patients, doctors and practices.
We not only meet, but we surpass the strict legislative requirements of privacy and confidentiality.
All data provided through the network is automatically de-identified and encrypted using PGP technology at the GP's practice, before it is sent to HCN. We are convinced that the approach we take to the handling of information would not allow us to re-identify patients.
The GPRN requires GPs to give their written consent before participating.
As an additional safeguard, doctors can view the de-identified data before sending it.
Importantly, patients can opt out at any time and have their de-identified information removed from the research database.
The de-identification process removes 20 types of information from the data prior to the GPs sending it to HCN Research:

· Patient title · Christian name · Surname · Preferred name · Street address · City/suburb · Medicare number · Pension number · DVA number · Home phone number · Work phone number · Mobile phone number · Family history · Social history · Notes - free text notes about patient · Sexuality · Letters written by the GP regarding treatment of the patient · Stored documents (scanned or produced through letter writing applications) · Comment field - free text field for GP to comment on a condition in patient's history · Notes field in the progress screen - free text field that allows the GP to comment on the current patient encounter

Once received, the data is only accessible by nominated HCN Research staff within a secure computer environment.
Because of the exclusion of the personal data and practices undertaken, HCN Research staff are unable to determine the identity of any patient.
Identities of participating doctors and practices are protected by confidentiality agreements signed by HCN Research staff as a condition of their employment. Only the Royal Australian College of General Practice and National Prescribing Service are notified so that GPs can receive their CA, CME and QPI eligibility points.

2. Use of de-identified prescribing information for research
Estimates are that 50 per of doctors currently using electronic patient management systems have only been computerised since June, 1999.
As a consequence our understanding of how doctors are using the technology is limited. As a major provider of patient management software HCN wants to improve its understanding of how doctors use its software eg. what functions they use more than others.
This helps HCN to refine its software to better meet customers needs.
It also contributes to skills development, helping doctors to learn good electronic prescribing habits, as well as improving their understanding and capacity to use specific functions of the program.
Since joining the network, doctors report their electronic record keeping is improving, with many now recording more than just prescriptions.
More doctors are using components of the program such as pathology, ordering modules and BP monitoring (500% increase), imaging (300%), immunisation (250%) and product information (200%).
The BP monitoring module is also an example of how patients can become more involved in monitoring their condition.
The doctor can print off the patient's progress and use the chart as a tool for monitoring, compliance and encouragement.

Summary
The GPRN operates without the need to have identifiable patient information. The emphasis of the research is on examining doctor efficiency and effectiveness within the scope of an "average" doctor's normal workflow.
Its main areas of focus currently are computerised support systems and disease management within the therapeutic areas of bacterial infections and depression. The program promises much in the way of future positive public health outcomes while using a methodology that protects the privacy of both patients and GPs.

Healthy outlook for GPRN - research case studies
Depression in General Practice Clinical Audit Research through the GPRN is helping GPs to improve diagnosis and treatment of depression, estimated to afflict 800,000 Australians each year.
Results of the research confirm depression is one of the most frequent conditions managed by GPs in the past six months.
HCN provides an analysis of a GP's previous consultations for depression, compared with aggregated results. The GP makes suggestions on improving quality of care for patients with depression and how they could improve their own knowledge of dealing with depression. GPs then conduct an in-consultation electronic clinical audit of patients with depression through Medical Director.
The doctor is prompted for consideration of diagnostic issues (eg. severity, co-morbidity, contributing factors, risk of suicide).
Treatment issues are also prompted, such as use of OTC's and other medications, treatment options and recall/reminder for patient review.
The doctor receives educational material online, such as the comprehensive DATIS Review of Management of Depression in General Practice, providing a thorough review of the diagnostic and medication issues for the Australian environment.
The electronic audit through Medical Director also allows the doctor to establish a recall/reminder date for review of patient progress and treatment compliance. Many patients are lost to follow-up and compliance to treatment can be poor without active review by the treating doctor.
The electronic audit stores information in the patient record and uses the management system for ongoing patient review and care.

Appropriate Antibiotic Audit
The appropriate antibiotic audit aims to improve use of antibiotics in URTIs and bronchitis by making available an electronic decision support system based on best practice guidelines.
Working with the National Prescribing Service, HCN has been able to provide advice and information to doctors, leading to greater use during consultations of the electronic Therapeutic Guidelines: Antibiotic in Medical Director.
The next step will be to identify conditions doctors most frequently refer to in the guidelines. The research has also yielded ideas on how to improve electronic patient education, such as making available "non-medication patient scripts" (eg. symptom relief, fluids and rest). These can be used where prescribing an antibiotic is not appropriate, or as a supplement to verbal advice.
This initiative will be implemented in upcoming releases of Medical Director.
We are currently assessing whether there have been significant changes in use of antibiotics for upper respiratory tract infections and bronchitis.
A focus will be on whether use of the electronic Therapeutic Guidelines: Antibiotic continues to increase and is reflected in the prescribing of antibiotics, as well as the level of use for other conditions beyond respiratory infections. Findings will form the basis for development of new decision support systems using best practice guidelines."
end
Editor's Footnote:
We are happy to report that since the above occurrences,Health Communication Network (HCN) has been awarded a twelve-month contract worth $1.4 million to supply 140 Queensland public hospitals and related health services with real time online health information. Under the contract with the Queensland Health Department, HCN will provide 24 hour online access to critical information for the treatment of patients, including the latest medical knowledge and treatment guidelines. The "Clinicians Knowledge Network" (CKN) will operate through all major public hospitals in Queensland and an estimated 17,000 personal computers connected to the Queensland Health online network.
Just goes to show that if your core values are right, then you will survive whatever is thrown at you.

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