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.

Consumer’s opinion of the PCEHR

It is not easy to find balanced information about the PCEHR. For that reason I welcome the information prepared by the Australian Privacy Foundation. The APF has been an advocate for privacy protections, representing the public interest to governments, corporations and industry associations.

The APF has always strongly supported eHealth, but in a press release Dr Juanito Fernando said: “Neither clinicians nor the rest of the community understand the system, let alone the full implementation details.”

The APF has prepared two FAQs: one for health consumers (great for waiting areas) and one for clinicians. The government’s FAQs about the PCEHR can be found here.

Let’s hope the new information will improve awareness about the PCEHR and stimulate discussion about the many grey areas.

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.

The 2013 PCEHR Quiz for clinicians and managers

Reliable information about the issues surrounding the PCEHR is not easily accessible, unless you read the 93 pages of the PCEHR Act 2012. How good is your knowledge of the national eHealth records system and are you aware of the pitfalls and risks? Do the 2013 PCEHR Quiz to test yourself.

1. Who has access to the data in the PCEHR?

a. The consumer and their clinician(s)
b. The consumer, their clinician(s), the system operator, health care organisations, repository operators, portal operators and contracted service operators
c. The consumer, their clinician(s), and the system operator in case of emergencies

2. The PCEHR Act 2012 allows secondary use of PCEHR data for the following purposes:

a. Public health emergencies
b. Statistical analysis of de-identified health data
c. Law enforcement purposes, health provider indemnity insurance cover purposes, research, public health purposes, and any other purpose authorised by law

3. Once practices or health care organisations have signed the participation agreement, their clinicians become liable for unauthorised access and data breach penalties. Are these penalties covered by all medical indemnity insurances?

a. Yes
b. No

4. If a clinician accidentally uploads information to the PCEHR (against a patient’s advice), what civil penalty is applicable?

a. $2,400
b. $12,400
c. $20,400

5. A clinician who has contravened a civil penalty provision may need to pay the government a pecuniary penalty of up to:

a. $20,400
b. $52,000
c. $102,000

6. The participation contract can be varied at any time by the government. What happens if a practice or health care organisation does not agree to these changes?

a. The government will not change the contract unless both parties agree
b. The PCEHR registration of the organisation will be suspended or cancelled
c. An independent mediator will be engaged to resolve the conflict

7. The PCEHR is opt-in. If consumers or health care organisations change their mind after they have signed up, is opt-out possible?

a. Yes
b. No

8. Once clinicians upload information to the PCEHR, the government owns the IP rights and grants all other participants rights to use the data. Do clinicians get their IP rights back if they cancel the participation contract?

a. Yes
b. No

9. What happens if practices or health care organisations cancel the participation agreement?

a. 7 of the 14 clauses survive termination of the agreement
b. Nothing in the agreement is valid anymore
c. The uploaded patient data will become inaccessible

10. How long will the information in the PCEHR be accessible after cancellation or death?

a. Up to 130 years
b. Up to 10 years
c. 28 days

Answers: 1B, 2C, 3B, 4C, 5C, 6B, 7B*, 8B, 9A, 10A.
*You can cancel but you don’t get your data (rights) back and you remain liable etc (see Q9)

Disclaimer: As with any contract, get independent legal advice.

PCEHR: Who is the customer? (slideshow)

PCEHR: Who is the customer?When starting up a project, service or business, an important question is: Who is the customer? This is not always the one who pays the bills. There may be other users or stakeholders. I’ve said it before: Everybody has to be on the same page for a project to be successful.

I’m not sure who the customer is in the case of the PCEHR. At first glance this seems to be the health consumer, as they have some control – unlike clinicians. Most GPs agree on one thing: the current PCEHR is not making their jobs easier or adding value. Are they customers too? Are there others?

Key to success?

Adding more features without reviewing the basic principles of the PCEHR-framework, is not going to make the problems go away. In the slideshow I’ve tried to capture the issues and some suggestions for improvement based on the feedback from doctors. Have a look and let me know what you think. Feel free to share, download or embed the presentation (view the slideshow on SlideShare).

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