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?

How to save the PCEHR

The resignation of NEHTA’s top National Clinical Leads in August 2013 was the final straw for the PCEHR. I have said it before and I will say it again: if clinicians are not on board the PCEHR will fail. There are some big decisions to make by the relevant authorities if they want to save the project, and making these decisions without clinical advice is impossible.

The PCEHR Act 2012 states that the data in the PCEHR can be used for law enforcement purposes, indemnity insurance purposes for health care providers, research, public health purposes and ‘other purposes authorised by law’. This is far from reassuring. There are many grey areas and unanswered questions. There are too many agendas. The PCEHR should first be a useful clinical tool to improve patient care.

What we need is an open, well-informed discussion about the purposes of the PCEHR. What are consumers and clinicians exactly saying yes to when they sign up?

Dr Mukesh Haikerwal
Two of NEHTA’s Top National Clinical Leads: Dr Mukesh Haikerwal and Dr Nathan Pinskier in Geraldton (August 2013). Photo: Dr Ian Taylor

Consumers must know exactly what happens with their data after they have visited the doctor or the hospital. We need to agree on secondary use of the data and informed consent by clinicians and consumers is a basic requirement here. The PCEHR Act 2012 and the participation contract should both be reviewed and made 100% acceptable to consumers and clinicians.

Most of all we need genuine stakeholder engagement. This is a big challenge but certainly not impossible. Let’s hope common sense prevails.

NEHTA visit: not exactly Khrushchev vs Kennedy

My email inbox was overflowing, there were text messages wishing me good luck, journos calling and a press photographer was rocking up at the practice. On Twitter NEHTA’s visit had been dubbed ‘Khrushchev vs Kennedy’, others said that Geraldton was like the little Astrix & Obelix village, resisting the mighty Roman legions of Julius Caesar with the druid Getafix’s magic potions. But the analogies turned out to be wrong (in a good way)…

Dr Mukesh Haikerwal and Dr Nathan Pinskier, the two prominent clinical leads working with NEHTA to get the PCEHR off the ground, had decided it was time to visit us in the west. Also present at the Meeting was AMA(WA) rep Michael Prendergast, one of our practice partners Dr Elly Slootmans, our CEO Richard Sykes and our operations manager Louise – who has spent about 100 hours earlier this year to get the practice PCEHR-ready before we realised that the risks of signing up would be too high at this stage for the business and the doctors.

Dr Mukesh Haikerwal
Dr Mukesh Haikerwal

The good

Mukesh, or ‘Mr eHealth’ as some are calling him, gave a persuasive presentation about the PCEHR, including the challenges ahead. His team is working on an interesting program called CUP (Clinical Utilities Program) to iron out the problems clinicians are facing when getting started or working with the national eHealth record system.

Mukesh and Nathan made a strong case for the PCEHR, including potential benefits such as electronic referrals, discharge summaries, ePrescribing, encrypted messaging etc. They seemed very aware of the issues and are putting in a lot of effort to fix them so the PCEHR eventually becomes a tool that makes our lives easier.

Concerns

After the presentation we had a good debate about some concerns, such as the legal framework of the PCEHR and the governance issues. Interestingly, many of the concerns are not technological but, as our CEO Richard explained, if we don’t resolve them, practices will find it difficult to sign up no matter how good the PCEHR software will be.

NEHTA visit
Michael Prendergast (AMA), Dr Nathan Pinskier (NEHTA), Richard Sykes (our practice CEO)

We talked long and hard about the PCEHR participation agreement and why this document is the reason many health care organisations will not sign up. Michael Prendergast explained the pitfalls of signing these kinds of contracts without legal advice.

Other topics we discussed were the (harsh) civil penalties related to the PCEHR, the IP data rights problem, and secondary use of data in the system.

We know about the benefits of the PCEHR for patient care, and indeed there are many, but what has been missing is a proper debate about the other ways the data could be used; the PCEHR Act 2012 mentions eg ‘law enforcement purposes’, ‘other purposes authorised by law’, and research.

The way forward

I was very pleased to see that Mukesh and Nathan acknowledged these problems and understood that we – and many other clinicans – cannot go ahead before this has been sorted out. Michael was very helpful and will take the issues back to the AMA.

It was a pleasure to talk to these tech heads and it once again became clear to me that this is a journey that will take many years. For the first time I saw some light at the end of the tunnel. Khrushchev vs Kennedy wasn’t the right analogy because our interests are not opposed, but I’d settle for ‘Roosevelt & Churchill’. Modesty is my best quality (~ Jack Benny). Mukesh and Nathan, thanks for listening.

NEHTA is coming to town

“Be a yardstick of quality” ~ Steve Jobs.

First of all, many thanks to the GPs, registrars, practice managers, journos and eHealth-specialists who made suggestions how to move the eHealth-records system forward.

The original comments can be found here. It’s an excellent read and summarises the sticky PCEHR-issues from a clinician point of view.

On Friday afternoon I received a phone call from NEHTA (National E-Health Transition Authority). Their clinical leads are coming to Geraldton to discuss the PCEHR. Our team of doctors and managers is getting ready. We have invited the AMA, and they’re flying in to Geraldton as well.

It will be good to hear first-hand why it is so hard to make the system more acceptable to clinicians – and for our clinical team to give feedback. But the main question is: will NEHTA and the Department of Health go back to the drawing board and change what needs to be changed to get clinicians on board?

It’s late, but hopefully not too late to make the PCEHR work for everybody. If there’s anything you want us to bring up (apart from the wish list mentioned above), feel free to leave a comment below and we’ll pass it on.

Will more money fix the national health record? What’s on your wish list?

According to Pulse+IT magazine NEHTA wants to make their e-Health records system (PCEHR) more useful and usable for clinicians and consumers. A steering committee chaired by GP Dr Mukesh Haikerwal will meet next week for the first time.

When I expressed my enthusiasm on LinkedIn, the following two spot-on responses made me smile:

Agree Edwin lets hope. However from the look of the makeup of the steering committee it does not look like there will be much input from regular GPs and is mostly in house between NEHTA and DoHa.

Why didn’t NEHTA do this at the scoping stage (before a line of code was cut). Now they are trying to do this retroactively and hope that it works…. Nothing short of amazing….

My wish list

Minister for health Tanya Plibersek has announced yet more money today ($8M): pathology and diagnostic imaging will be stored in the PCEHR.

How to improve the uptake of the PCEHR by clinicians? I will send in my wishlist. Here it is:

  1. A public list should be made available of all organisations with access to clinical patient information
  2. Government and affiliated organisations are not allowed to use any uploaded clinical data for e.g. insurance purposes, audits, police/immigration/background screening etc. This needs to be spelled out in the participation contract
  3. Data mining and scientific research can only be performed after doctor and patient have given consent. This needs to be spelled out in the participation contract
  4. Remove the dreaded IP clause from the participation contract that states that all information can be used by the government world-wide, perpetually etc
  5. When health care organisations or individual clinicians no longer want to take part they must be able to remove all their uploaded clinical data from the database
  6. Ensure and facilitate that clinicians are not exposed to higher medicolwegal risks when participating
  7. Registration for the PCEHR as well as cancellation should be quick and easy
  8. Ensure a 24/7 knowledgeable and custom-oriented help desk with minimal waiting times
  9. Send out a quarterly newsletter to all participating clinicians to keep them up-to-date with PCEHR and NEHTA developments
  10. Cherish the clinical steering committee, make sure it’s involved at all times, and ask for lots and lots of feedback from clinicians!

What’s on your wish list? Leave a comment below and I’ll send it to the steering committee.

6 issues that need to be addressed to make the PCEHR a success

Have you made up your mind? Are you going to sign up for the personally controlled e-health record (PCEHR)?

I believe six issues need to be sorted out as soon as possible to make it easier for consumers to take part:

  • Confidential patient data is potentially unsecure in the PCEHR Govt cloud
  • Too much risk & liability for health professionals
  • Uploaded PCEHR data will be used by Govt for other purposes incl data mining
  • Up to 5 minutes extra per patient is needed to upload and manage online PCEHR data
  • Longer consults create higher fees & increased costs for patients
  • More red tape, difficult to understand rules and regulations

It’s got a lot of potential, but the devil is in the detail.

PCEHR