Welcome to the ‘open era’ of health information

“When I graduated, my medical notes were an aide-memoire to help me treat my patients. When I joined a group practice, I realised that my notes helped my colleagues and me treat our patients. Since computerisation, my notes and health summaries have helped me to write better referrals so that colleagues outside my practice can assist me in treating patients more effectively. Now that I can share an up-to-date health summary on MyHR, I realise that my notes can help my patients to achieve better outcomes from the health system, even when I am not directly involved.”

Dr Steve Hambleton, AJGP

Five years ago, in 2014, I wrote about OpenNotes because I thought it was a new and fascinating concept. I soon discovered that giving patients access to health records triggered strong emotional reactions: patients loved it and many doctors thought it was one of the scariest ideas ever.

Fast forward to 2019, and about 90% of the Australian population has access to the national My Health Record (MyHR). According to the Australian Digital health Agency over 80% of general practices and pharmacies, 75% of public hospitals, and 64% of private hospitals have registered.

It took a while, but Australia has sorted out most of the digital teething problems. A large part of what doctors do every day – from writing prescriptions to requesting tests – is now recorded and can be viewed by patients, other health professionals and researchers.

This is only the beginning. Secure messaging is one of the next big topics on Australia’s eHealth agenda. By 2022 patients and healthcare providers can communicate and share more health data than ever before via interoperable, secure digital channels.

Nobody is expecting this to be an easy journey, but I’m looking forward to the destination! Welcome to the ‘open era’ of health information.

The Danish health IT solution: small-scale brilliance

When his wife attended a conference in Copenhagen, Adelaide GP and RACGP board member Dr Daniel Byrne took the opportunity to find out why Denmark is one of the world leaders in the use of e-health.

One of Australia’s problems is the reliance on paper documents. For example, almost every healthcare organisation designs their own referral forms and we still fax and post a lot of documents. In Denmark a ‘one-letter solution’ was introduced years ago: one electronic form used by thousands of health organisations.

“No patient ever left the surgery with any paper,” said Dr Byrne. “It seemed very well organised with a great e-health network. No faxes were used as everything is connected via secure networks – prescriptions, referrals, pathology and radiology ordering, even email consults.”

E-mail consultations

Dr Daniel Byrne
Dr Daniel Byrne about the Danish e-health system: “The live medication list was too good to be true.” Image: Linkedin.

There are no incentives for Australian GPs to communicate with their patients by phone and email, whereas Danish GPs are paid to to take calls from patients every morning. They are also paid for e-mail communications with patients.

Dr Byrne: “The email consults are excellent. The patient has to send their email via a government secure email system. Every citizen in Denmark has a government email address – maybe similar to our MyGov system.”

“Only simple non urgent requests are done by email. I think the GP has three days to answer. The payment was around $10 per email for the GP and this seemed to work fine. If there is a bit of to and fro with a patient via email the GP asks the patient to come in for a proper consult.”

Shared medication record

National databases exist for medications and laboratory results. Dr Byrne: “The live medication list was too good to be true! Click on the medication list in any GP software or hospital system and within 2-3 seconds up pops the same real-time live medication list.”

“The GP I was with could see the prednisolone dosing schedule for a patient with polymyalgia from hospital and then just take over future prescriptions. Everyone is working off the same list. I am sure it is not perfect but a pretty good starting point compared to our nothing.”

It appears the system encourages continuity of care. After hours medical services use the same computer system as GPs and hospital discharge summaries arrive electronically at the GP surgery within two days. Scripts are sent electronically to the patient’s preferred pharmacy.

Patient access

Compared to many other European countries Denmark has a high public satisfaction with the health care system.

An interesting aspect is the access patients have to the system. Via the Danish National Health Portal patients can access hospital discharge information, laboratory results, the live medication list and waiting list information.

Patients can electronically schedule GP appointments, send e-mails to their GP and renew prescriptions. They can also see who has accessed their health records.

All doctors are allowed to access the health records, but other health professionals require patient consent first. Danish law does not allow the interconnection of IT systems across sectors, such as health and taxation.

Miles ahead

With a population of 5.6 million Denmark is one of the smaller European countries, which may make it easier to roll out e-health. The system is not perfect and there are always issues, such as interoperability.

Overall Denmark seems to be miles ahead of many other countries, including Australia where we still rely heavily on the fax machine. Dr Byrne: “In Denmark it is illegal to fax anything as the system works on a national ID number that has to be kept secure.”

The benefits of consumer online access to health records

Consumer access to electronic health records may not be far off. In the not-so-distant future people will look up their file from home or a mobile device. They will also be able to add comments to their doctor’s notes.

In its current version the Australian PCEHR allows limited access, but the US OpenNotes record system has gone a step further by inviting consumers to read all the doctor’s consultation notes.

Pulse+IT magazine reported that 18 percent of Australian doctors believes consumers should be able access their notes; 65 percent would prefer limited access and 16 percent is opposed to any access at all.

What are the pros and cons? Here are some of the often-mentioned arguments:

Pros

  • Improved participation and responsibility
  • Increased consumer’s knowledge of their health care plan
  • Better self-management
  • Consumers can read their notes before and after a consultation as reminder
  • Consumers can help health practitioners to improve the quality of the data, eg by adding comments
  • Consumers can better assist practitioners in making fully informed decisions

Cons

  • Consumers may interpret the data incorrectly creating unnecessary concerns
  • Increased risk of security breaches and unauthorised access
  • Unwanted secondary use of the data by eg insurance companies or governmental organisations
  • Practitioners may need to change the way they write their notes
  • Increased workload

An article in the New England Journal of Medicine reported that OpenNotes participants felt they had a better recall and understanding of their care plans. They also felt more in control. The majority of consumers taking medications reported better adherence. Interestingly, about half of the participants wanted to add comments to their doctor’s notes too.

Most of the fears of clinicians were, although understandable, ungrounded:

  • The majority of participants was not concerned or worried after reading what their doctors had written (many just googled medical terms and abbreviations)
  • Consumers did not contact their doctors more often
  • A minority of doctors thought OpenNotes took more time, others thought it was time-saving

According to the OpenNotes team transparent communication results in less lawsuits. I couldn’t find any information about the security risks of the system.

Overall, consumers were content: 99% percent preferred OpenNotes to continue after the first year. Doctors were positive too, see this video:

Culture change

Consumers have the right to know what information is held about them, and they have the right to get access to their health records. Online access therefore seems to be a logical step to exercise these rights. Although the PCEHR allows consumers to see a summary, the consultation notes cannot be viewed. OpenNotes is about sharing all consultation (progress) notes between a consumer and his/her practitioner.

I believe there are 3 trends happening that will push this development:

  • The culture of sharing data online
  • The increasing consumer participation in health care
  • Evolving digital and mobile technologies

The 3 main reasons why it will not happen overnight:

  • An attitude change towards full access takes time
  • Security and privacy concerns
  • Lack of incentives for software developers and practitioners

Improving transparency 

Online access to electronic records (viewing and commenting) will boost transparency. It will change the interaction between consumers and practitioners and may even improve quality of care. I’d love to see more trials and experiments in this area. What do you think?