Health Information Management and Technology Plan
Submission of Women's Health Action Trust
1 April 2001

Background

Women's Health Action has a long-term interest in the issue of personal health information sharing using the NHI. We have organised public meetings, seminars, met with NZHIS and took a complaint about North Health plans to the Privacy Commissioner. Following this the Privacy Commissioner released a report, Medical Record Databases - Just What You Need? in 1998.

When we organised public meetings on this topic, the message from participants was that they wanted their records held with the person providing their care. They were deeply concerned at systems which shared information more widely.

2. The WAVE project

We have considerable concerns about this project. These are:

2.1 Lack of explicitness in consultation documents

Neither the leaflet, nor the submission document clearly outline what the project is. There was far more clarity in the Health Knowledge Strategy, but this was not routinely provided as part of the consultation. Consequently, it would have been unclear to many what it was all about. The key points - greater use of NHI and the development of longitudinal health records - were not clearly made in the consultation documents

2.2 Lack of consumer involvement

The obtuseness of the submission documents will mean that many consumer and community groups will not perceive the subject as of vital interest to the public. In addition, when we have checked with groups, many have not received an invitation to take part. The timeframe of four weeks also makes it difficult for consumers to participate.

The members of the HIMTP Advisory Board contain no consumer or community representatives, so that there is no public voice at the highest level.

Page 10 of the Health Knowledge Strategy states that 'stakeholder views' have been obtained and there is a summary in Figure 1 of Stakeholder views. How was the consumer view arrived at? What consumer stakeholder views were sought?

On page 26 of the Health Knowledge Strategy it states that consumer representatives have been involved in the development of guidelines for sharing and accessing personal health information. What consumers? And where are the guidelines?

This week we have been approached (along with others) to nominate a person to Standards New Zealand for an Expert Committee to develop a standard on clinical records. This is being done under contract to the Ministry of Health. Participants are expected to pay their own travel and accommodation costs, and their supporting organisation is to pay for their participation. The total cost of participation would be around $6,OOO for those out of Wellington. It is difficult to see how a consumer organisation such as ours could possibly be involved, although we would like to be. This is a totally unacceptable way of getting input and does not represent a serious attempt to put Principle Three of the Health Knowledge Strategy 'Actively involve consumers and communities' into practice.

It is our view that such an important subject should have called for an approach that created the widest possible opportunities for discussion and comment by the public and for consumer interests to be represented at the highest level in some numbers.

2.3 Poor quality of consultation documents

This will be referred to throughout our submission. In summary, there is no assessment of need, no evidence-base for the claimed benefits and no evaluation of whether the scheme is practical and workable. These are all serious omissions and provide no basis for going ahead.

When we received the submission documents, we asked for this information. The reply we got was that this information did not exist. We have previously asked for this kind of information from the NZHIS and had received little that supported such proposals.

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3. WHA submission on HIMTP and Health Knowledge Strategy

This submission will confine itself to comment on the proposal for Electronic Health Records using the Bill

3.1 Extent of proposal

There is a lack of clarity as to what is intended and how it would work. There is no clear outline of just what records would constitute EHRs. Page 11 of the Health Knowledge

Strategy says that information would come from hospitals, well child, GPs, and dentists.

Elsewhere disability support information, pharmacists, laboratories are mentioned. On page 11 it is stated that the information may include 'clinical, demographic, environmental, social and financial data.' In the HIMTP submission document it is also proposed that NGOs and other community-based providers should be able to use the NHI. This would enable their records to be linked into EHRs.

This is a very sweeping proposal that would constitute an unprecedented amount of information about an individual and would be available to an extensive range of groups and persons, as well as the state. It is critical that there is an explicit description of just what information is being talked about. What does 'social data' mean? What does 'financial data' mean? Does it involve data matching with ACC? With social agencies? Beneficiary status? Without an explicit description of the data to be gathered, it is difficult to comprehend the full scale of this project and comment in an informed way.

3.2 Consent

There is a huge issue about consent to allow various providers or others to access personal health information. Previously, when these proposals were first mooted, we were assured that nobody would look at any information without the consumer's consent.

At that time, we questioned how consent could be freely given as there was an element of coercion about sitting in front of a provider and being asked if that information could be accessed. It would also be very difficult for a consumer to give consent without knowing what was held and by whom. Despite the Privacy Code, this is not done well now. (Eg, some GPs simply put a notice on the practice noticeboard about providing patient information to the IPA.) Given the current practice, it is difficult to see how providers would rise to occasion when faced with much more serious inroads into personal privacy.

In addition, the very act of consenting involves disclosure of personal health information. For example, 'You may look at my lab records, but not my visits to the sexual health and abortion clinic.' Or, 'Can you tell me what is held so I can consent?'

In the Health Knowledge Strategy there is only one mention of consent. On page 11 it states that 'Access to EHRs will be based on the consent of the individual.'

There is no further discussion as to how this will occur in practice and how the issues we have raised above will be addressed.

3.3 Benefits of EHRs

These are given on page 12 as

No evidence is provided as to how these will be achieved.

There are no references through the entire document!

In other parts of the document it is claimed that EHRs will cut down on duplication of tests. Hospital doctors will have access to the results of tests ordered by GPs. No figures are produced as how often tests are duplicated or the cost. When we have talked to hospital doctors about this, they say they would be unlikely to rely on GP-ordered tests in many instances, as the GP may not have ordered the same tests that they would order, and also that as most consumers wait some time between a referral and hospital appointment, they would order new tests to see what the person's current health status was as it may have deteriorated or improved while the person was waiting. They could not act on old information.

How will EHRs improve health outcomes? How will they improve participation? How will they 'empower' consumers?

What research backs up these claims? What models can be provided from overseas? Have there been any evaluated pilots?

We have been asking for this information for 6 years. Does it exist anywhere? The Privacy Commission Report in 1998 also stated that the commission had been unable to find any research that linked centralised records to better health outcomes.

Surely the MoH has carried out literature searches to back up the claims made here. What does the literature say? Without this information these claims are purely rhetoric and hype It seems to us that EHRs have been invested with sweeping benefits that are not backed up by any evidence.

3.4 Risks of EHRs

The discussion of risks is very narrow and relates solely to privacy.

Various strategies are proposed to address security such as firewalls, encryption etc. The report of the Privacy Commissioner, entitled Medical Record Databases - Just What You Need?, discussed how these were not necessarily secure. Indeed the report said that use of the internet was an insecure method of transmitting information. This report is not mentioned in the HIMTP and we have never seen the NZHIS or MoH discuss how it intends to address the concerns contained in this report. There are other risks that are not discussed in the Health Knowledge Strategy.

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3.4.1 Quality of information
Some store is put on the proposition that electronic records will get around the problems of doctors' poor handwriting.

But there is no information from studies or evaluations of the quality of information in electronic records. There seems to be an assumption that information recorded electronically will ipso facto be accurate.

There are studies that show that there are many inaccuracies in patient records. Why would these disappear or lessen with electronic records? The information recorded is reliant on the person entering it, who can makes mistakes. Why would they make fewer mistakes on a computer than on paper?

As the strategy notes, many GPs already have electronic patient records. From our contacts with consumers, we are aware that these are just as likely to contain inaccuracies as paper records. In fact, there is a case to be made for the argument that EHRs may lead to the perpetuation of such errors if a raft of providers in different settings rely on these records. There may be less chance of correcting mistakes.

3.4.2 Over-reliance on EEIRs

On page 12 it is stated that provider productivity will be enhanced because information will be easier to find, read and assimilate, there will reduction in history taking, physical examinations and laboratory tests.

We have great concerns about over-reliance on patient records. We view with particular alarm the suggestion that EHRs will lead to a diminution of the need to take histories and carry out physical examinations. All doctors make mistakes, fail to detect problems and miss signs and symptoms. The repetition of history-taking and examinations mitigates against these errors going undetected.

Once again, has the safety of this been tested by research?

We are also concerned at the potential to disempower consumers if doctors rely on electronic records from other providers for their information about a person, rather than talking to the person. There may be less chance for consumers to participate in decisionmaking and their own care, if doctors feel they have received what they need via the EHR.

3.4.3 Loss of confidence for vulnerable consumers

The amalgamation of records held in different settings enables providers to see sensitive information to which they may not otherwise be privy. Examples of extremely sensitive information are

We are concerned at the sharing of information such as this, and whether this would:

We raise both these as very serious issues which are not examined in the strategy.

If either of these scenarios occur, then there will not just be no 'health improvement' but worse health care and less access for vulnerable groups.

3.4.4. Practical concerns

The proposal will require a very wide range of providers becoming extremely computer literate and skilled at security protections. Has there been any assessment of the training needs of providers? Who will pay for the training? Has there been any assessment of the willingness of a range of providers to participate?

The vision for the Health Knowledge Strategy states that it would be 'all the accurate information you could possibly want....'

We have concerns that providers may well be swamped with information. When a provider accesses an EHR they may download a huge volume of material including treatment and disease management protocols, clinical pathways etc.

Many providers have extremely tight schedules for seeing patients. For example, many GPs have 10 minutes per patient, hospital specialists a little more. Isn't there the possibility that there will be far too much to be read and perused? That doctors will find the system dysfunctional?

Has any trial/pilot assessed the practicality of the proposal? Has there been any trial/pilot of doctors' use of disease management programmes in the New Zealand context?

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3.5 Consumer information

At a number of points in the Health Knowledge Strategy consumer information is discussed. Indeed, on page 37 the statement is made that 'provision of access to consumer information is seen as a core health and disability support service.'

We were delighted to hear this as that is our core business and we have developed a web site, web training courses for health consumer groups, and under contract to the HFA and New Zealand Guidelines Group have developed various consumer resources.

However, we are aware that there is a paucity of good quality information. We are using an evidence-based approach to developing resources, which includes literature searches, wide consultation and pretesting with consumers. We have developed a great deal of expertise in this area.

Consequently we aware that this process is time-consuming and costly.

We are therefore somewhat concerned at the proposal on page 38 for MoH to work with Helpline to develop information. Some years ago the MoH stepped out of the role of providing consumer information which had previously done in some areas. We would like to know more about this proposal. Does Helpline have the expertise and resources to develop consumer information on a very wide range of topics?

There is a danger that the size of this task is under-estimated and that poor quality work might result. This would not be in consumers' interests.

4.0 Conclusion

It is our submission that the HIMTP is poorly thought through, lacks support of an evidence-base, and that the risks and possible outcomes have not been adequately explored. There is no literature to support the claims made for health improvements. The security issues have been inadequately addressed.

There is no practical assessment of the feasibility of the plan, nor of whether it would positively enhance the practice of providers.

There is a high degree of risk that it would result in an unwieldy, unworkable electronic system creating significant costs. New Zealand's experience with large interactive databases has not been positive.

There has been grossly inadequate consumer input, and, despite the rhetoric of consumer involvement, little serious attempt has been made to achieve this. Certainly this current submission process cannot be used as validation from the public to the plans.