Where did our health data go?

Data is like garbage, you’d better know what you are going to do with it before you collect it ~ Unknown

It took a while, but the Department of Health is now inviting submissions about the various ways digital health information in the national My Health Record (MyHR) should, and could, be used.

By law information in the MyHR can be collected, used and disclosed ‘for any purpose.’ This ‘secondary use’ of health data includes purposes other than the primary use of delivering healthcare to patients.

The consultation paper is not an easy-read and I wonder how many people will be able to make heads or tails of the document – but then again it is a complex subject.

Nevertheless, secondary use of health data seems to make sense in certain cases. As the paper states:

“Secondary use of health data has the potential to enhance future healthcare experiences for patients by enabling the expansion of knowledge about disease and appropriate treatments, strengthening the understanding about effectiveness and efficiency of service delivery, supporting public health and security goals, and assisting providers in meeting consumer needs

Risks and red flags

There are risks. For example, I would be concerned if insurance companies or the pharmaceutical industry would get access to the data or if the information would not be de-identified.

The consultation paper also mentions performance management of providers, and driving ‘more competitive markets’. These are red flags for many health providers because there is little evidence these purposes will benefit patient care.

For example, performance management has gone wrong in the British Quality and Outcome Framework pay-for-performance system and has resulted in:

  • only modest improvements in quality, often not long-lasting
  • decreased quality of care for conditions not part of the pay-for-performance system
  • no reduction of premature mortality
  • loss of the person-centeredness of care
  • reduced trust in the doctor-patient relationship
  • loss of continuity of care and less effective primary care
  • decreased doctors morale
  • billions of pounds implementation costs

According to the consultation paper it is ‘not the intention’ to use MyHR data to determine remuneration or the appropriateness of rebate claiming by healthcare providers.

Interestingly, a similar discussion is currently happening around the changes to the quality improvement incentive payments (PIP) to general practices and the proposed requirement to hand over patient data to Primary Health Networks without, at this stage, a clear data framework.

Research & public health

It seems reasonable to use the information in the MyHR for research or public health purposes with the aim to improve health outcomes. The access, release, usage and storage of the data should obviously be safeguarded by proper governance principles.

A good idea mentioned in the paper is a public register showing which organisations or researchers have requested data, for what purposes, what they have found by using the data and any subsequent publications.

I hope the MyHR health data will never be used for e.g.:

  • commercial purposes including by insurance companies
  • performance management or pay-for-performance systems
  • sharing or creating identifiable information for example via integration with other sources
  • low value research

The My Health Record is far from perfect but still has much to offer. Unfortunately it has an image problem and its value proposition will need to be clearly communicated to health professionals. There are also several loose ends that need fixing, such as workflow challenges and the medicolegal issues around uploading and accessing of pathology and diagnostic imaging reports.

Knowing exactly what MyHR data will be used for and by whom will be an important factor for many in deciding whether to participate and at what level. ‘Where did our health data go?’ is a question health professionals and consumers should never have to ask.

You can complete the public survey here. Submissions must be received no later than midnight Friday 17th November, 2017.

Why your GP doesn’t have a Facebook sharing attitude

The success of Facebook is based on sharing content with friends and family. I’m a fan of social media but in healthcare sharing of information is often a no-go zone.

Doctors don’t like sharing patient information with third parties for various reasons: they have sworn an oath, must adhere to a code of conduct and have an ethical and legal obligation to safeguard the privacy of their patients.

The patient-doctor relationship is built on trust: patients need to feel safe to share their concerns with a doctor. Unfortunately in Australia there are a few worrying cracks in the system, such as the access of insurance companies to health records.

Life insurance industry

Last week I had the opportunity to present the concerns of the Royal Australian College of General Practitioners (RACGP) at the Inquiry into the Life Insurance Industry of the Joint Parliamentary Committee on Corporations and Financial Services in Canberra.

The issue is well summarised in this ABC News article ‘Doctors resisting health records being sent to insurance companies’. Based on feedback from GPs, the RACGP recommends in its submission into the inquiry that insurers should not be allowed to ask for full patient health records.

This is an example of inappropriate sharing of information with a third party (which differs from sharing between health professionals) and can have serious ramifications.

Inquiry in Life Insurance Industry
Last week I had the opportunity to present the RACGP submission at the Parliamentary Inquiry into the Life Insurance Industry.

5 reasons not to share

There are five reasons why third parties such as insurance companies should never have access to health records:

# One

People often don’t understand that ticking a box on the life insurance application form means that insurers can have access to their health records, including confidential information that has been shared with doctors, often over many years, and may not be relevant to the insurance company.

In the experience of GPs many people withdraw their consent once they are aware of the possible repercussions, and in some cases discuss with their GP to submit a targeted, more relevant medical report instead.

# Two

The therapeutic trust relationship between a GP and a patient could be affected.

Patient knowledge of the issues they may face after disclosing symptoms or seeking treatment, particularly for mental health issues, is likely to discourage disclosure and help-seeking, which adversely affects patient wellbeing.

# Three

Understanding that medical records can be requested by an insurer may lead GPs to under-document or under-identify patients at risk in efforts to make sure the patient’s access to insurance is not affected.

GPs have advised that they feel they are placed in a difficult situation where they need to ensure adequate documentation of their consultation with patients while also considering the broader impact this may have on their patient. This in turn may have medicolegal ramifications for doctors.

# Four

Insurers not only have access to but also store thousands and thousands of health records. This raises all sorts of questions with regards to data usage and standards around security, privacy and confidentiality.

# Five

Many GPs are concerned about the risks of misinterpretation by insurers when reviewing a patient’s consultation notes.

Medical consultation notes are a comprehensive written record of concerns, symptoms, examinations, investigations, treatments and planned reviews. They function as an aide memoir and are not made for the assessment of risk for insurance purposes.

Suggested solutions

There should be a tightening of the requirements around requests for full medical records by insurers. With patient consent, doctors should only be asked to provide a targeted and relevant report to the insurer.

There is also a clear need for greater patient education on consent and the release of health information to insurance companies.