The doctor will see you… never. Issues with online referral services.

There are many benefits of online health services and they can complement traditional face-to-face GP visits. But there are also examples that raise questions.

The young woman was in tears. When she came in she had initially asked for a referral to a surgeon for a breast augmentation. During the conversation it turned out that her partner had made it clear her breasts were too small.

We ended up having a chat about relationships and body image. At the end of the consultation she decided she needed some time to think things over and talk to good friends, and that she would come back if she needed further assistance.

The problem with online referrals

At first sight, the Qoctor website seems an easy, convenient online medical service that provides sick certificates and referrals.

The site tells visitors: “(…) we understand that a well person who simply needs a letter to see a specialist should be able to get one without requiring a GP consultation.”

I’d like to challenge that. The woman in the example above was well but did she need a referral to undergo an expensive procedure that would change her body?

There are many issues with a system that allows access to specialist care without a review by a primary care doctor. Unnecessary referrals, increased costs and further pressure on the hospital system are just the beginning.

Once a visitor has selected a specialist the system asks a few simple questions about allergies and previous surgery and there are some boxes to tick (see image). I wonder how many people will just enter through to get to the section where you pay and automatically receive the referral letter (as pdf file).

How many people will just enter through to get to the section where you pay and receive the referral letter?

Good telehealth principles

Sometimes writing referrals is a straightforward process but often it is not. What is missing here are the safeguards with regards to other management options, coordination of care, the communication between the usual doctor and specialist, and follow-up. What about whole patient care?

Interestingly the service seems to assume that – after automatically cashing in the online referral fee – the patient’s usual GP will be responsible for the follow-up if required.

The Royal Australian College of General Practitioners (RACGP) has developed some common-sense principles for telehealth services, including on-demand online health services. These principles include the following:

  • On-demand telehealth services should preferably be provided by a patient’s usual GP or practice
  • On-demand telehealth services to unknown patients should only be provided when the patient’s usual practice cannot provide care for them, either in person (at the practice or by a home visit) or online, and no other general practices are physically accessible
  • Patient notes should always be sent to the patient’s usual GP or practice (with the patient’s permission). This ensures continuity of care and centralises patient records.

Commercially enticing 

I suspect that most people are aware of the risks of online health services and will consult their GP first. At the same time there will always be people who are attracted to these services because they are quick and easy. It is also commercially enticing: if you sign up for Qoctor you may win a $100 Coles Meyer gift card.

The patient testimonials on the website, which probably go against AHPRA’s advertising guidelines for regulated health services, seem positive. The question is usually: are these real testimonials?

As always with disruptive technologies there is the convenience aspect for consumers – but is bypassing the most efficient and cost-effective part of healthcare by printing out an online ticket to the expensive part in the best interest of Australians? I doubt it.

The (patient) case discussion in this blog post is fictional and based on similar consultations. Disclaimer and disclosure notice. Follow me on Twitter: @EdwinKruys.

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.”

A painful topic: what doctors need to know (according to patients)

Ok, so I was wrong. I really liked the RACGP good GP television commercial. It had some flaws but I thought they were small in the grand scheme of things (see my last post). But many patient advocates did not agree and were unhappy about the lack of communication portrayed in the video.

Blogger Michelle Roger commented: “My current GP asks me what I want to do, what I think is most important and together we sort through the problem at hand and potential solutions. I feel valued and heard and trust her more knowing that she listens and knows me and my family.”

“That for me was missing in the video. It was one-sided and the patients appeared little more than props to be talked at. In fact the patients had no voice at all. A problem that still permeates a lot of medicine.”

Crockey health blog posted an article titled ‘The Good GP never stops learning: the RACGP video that made doctors cry – and patient advocates wince’. In a response to this article Irish blogger Marie Ennis-O’connor wrote on her blog: “We can’t just talk about a commitment to patient centred care – we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient.”

Patient blogs

I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better. I thought that was a good idea so I asked for some recommendations and started reading.

I can tell you, it didn’t cheer me up but it was enlightening. It felt a bit like a refresher course “do’s and dont’s for doctors”. What I read was that, in the eyes of patients:

  • Doctors often don’t know how to deal with disabilities
  • Doctors sometimes blame patients for treatment failures
  • Some doctors find it hard to accept patients as experts
  • Doctors don’t always communicate well.

Now that I’ve read the blog posts I feel that I can better appreciate the patient response to the RACGP video – and I learnt a lot more along the way.

I have been given permission to share parts of these blogs and I recommend anyone who works in healthcare to read on. It may help to bridge the divide. Doctors beware: don’t expect flattery.

Empathy towards disability

Carly Findly
Carly Findlay: “Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.” Source: Carly Findly

In one of her posts writer and speaker Carly Findlay tells the story of how doctors gave up on her and told her parents to prepare for her death, and how she later met one of these doctors.

(…) “Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears. I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).”

(…) “Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts.”

(…) “The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient.” (…) Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.”

Read the complete post here. Follow Carly on Twitter

Blaming patients

Caf
Caf: “I’m not sure that I truly trust any doctors, despite having a lovely GP.” Source: Rellacafa

Blogger Caf explains how doctors told her to see a psychiatrist when their attempts to treat her chronic pain failed.

“I had arrived at the appointment of the reveal, hobbling with a pair of forearm crutches. I could hardly bear any weight on the offending ankle. It didn’t take long for him to deliver his message, laced with condescension and arrogance. ‘There’s nothing wrong with your ankle. Why are you on crutches?’”

(…) “Chronic pain has been misunderstood and stigmatised for so long that many people probably don’t know what to believe. Even patients themselves often wonder if they’ve just gone crazy because their symptoms are so utterly illogical.”

Caf says that her experiences have affected her trust: “I’m not sure that I truly trust any doctors, despite having a lovely GP.”

Read the complete post here. Follow Caf on Twitter

Michelle also writes about pain in this post: “And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don’t get over pain and require ongoing pharmaceutical management are weak.”

“Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don’t recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.”

The patient as expert

In another post she writes: “As a patient with an unusual, complex, and poorly understood disorder, 9 times out of 10 when I see a new doctor I am the expert in the room.”

(…) “I spend my spare time researching my disorders on Medline. I flip through Cochrane Reviews, and review consensus statements regularly. I read up on the drugs I’m taking and keep abreast of current research trials. On forums, I can ask questions of other patients.

“The constant fight to be heard is exhausting

Arm rash Michelle Rogers
Michelle Rogers: “I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.” Source: Living with Bob (dysautonomia)

(…) “Some doctors are quite happy to acknowledge that I may know more about my disorder than they do. For example, my GP is happy for me to take the lead on my treatment needs. Even my cardiologist is happy to discuss my disorder in more of a collegiate manner, than the traditional doctor-patient relationship.”

(…) “Yet there are many others who are nothing short of dismissive. Should I dare to suggest a potential treatment or line of investigation the appointment can become adversarial. At times what I say is outright ignored.”

“Case in point my recent hospital admission. Despite having a red allergy band on my arm, sharing the information from my Allergist, and speaking to both my neurosurgeon, anaesthetist and senior nurse about my allergy to adhesives, I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.”

(…) “The constant fight to be heard is exhausting. We are told that we must be our own advocates. That the future is patient-centred medicine. That rapport and making a patient feel part of the decision-making model leads to more compliance and more successful outcomes.”

New technology

Michelle: “Patients no longer live in a bubble where they are reliant upon their doctors as the only source of information. With the advent of social media and the ease of access to medical journals, patients can be as up to date, and at times, in front of their doctors, with regard to advances within their various disorders. We come empowered and informed to our appointments and have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us.”

“We have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us

“The medical community needs to be aware of the new ways information is being shared, especially the speed at which information can now travel. Instead of criticising patients for researching their ailments, they should instead be working with them, especially to direct them to more appropriate medically sound sources of information.”

“Patients are already distrustful of big pharma and the way research is funded. If their physicians also refuse to help them navigate these areas or are dismissive of their efforts, such distrust will also pass to them, to the detriment of both practitioner and patient.”

Read the complete post here. Follow Michelle on Twitter

Doctors who listen

Carly: “I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet.”

“Their compassion means I am a human being first

“She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.”

“And she told this junior doctor how lucky they are to have me as their educator. What a compliment. I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.”

How one GP gives his patients access to their electronic health records

The start of Doctor Amir Hannan’s career was a rocky one. In 2000 he took over the surgery from convicted murderer Doctor Harold Shipman. On their first day, Amir and his colleague found that Shipman’s children had removed all furniture, phones and computers from the practice. Equipment had to be borrowed from other surgeries.

The practice has long since been turned around into a thriving GP clinic with a strong focus on eHealth; for the past 7 years patients have had online access to their electronic health records.

Around the world there are several projects going that allow patients to get access to their records, and Amir Hannan is one of the trail blazers.

Mobile screenshot
Dr Amir Hannan: “You can do all these things via smart phone, tablet or PC.” Image: supplied

He did his medical training at Manchester University and then trained as a General Practitioner in the north-west of England. I got in contact with him after he posted a comment on my blog post about OpenNotes, and he was kind enough to talk to me about his amazing pioneer work.

Empowering patients

Amir is passionate about the project: “I am motivated by the desire to do the very best for patients and staff by bringing out the best in all of them. Empowering them, empowers me. When they benefit, I get an immense sense of achievement. It becomes infectious and helps me to overcome any challenges I may face.”

The practice administration and clinical system he uses in his practice is called EMIS, widely used by GPs in the UK. Amir: “EMIS also provides a secure online facility for patients, called ‘Patient Access’, which allows patient access from a range of internet devices.”

What are the benefits?

Amir says the system offers many advantages:

“Benefits include a more open relationship with patients, which enables patients to feel more in control. They can book appointments online, order prescriptions online, update their contact details and access the full records if they wish. This helps patients to read what the doctor or nurse has said, see test results or letters as soon as they arrive back in the practice, check for any errors or missing data and help with completing medical and insurance forms.”

“It improves the relationship between patient and clinician, leading to a partnership of trust.

“Information buttons provide links to trusted information so that patients do not have to do a Google search. You can do all these things via smart phone, tablet or PC.”

“It improves the relationship between patient and clinician, leading to a partnership of trust. Patients use it intelligently saving their time and doctors’ time to make the system safer and more efficient.”

“Patients can send secure messages electronically, write into the surgery on paper and their comments can be added to the record or they can complete an Instant Medical History which we have recently introduced. We do not encourage email as it is not a secure means of communication and our replies could be seen by other family members which may compromise the patient’s right to confidentiality.”

“We need to do further studies to prove patients accessing their records and, most importantly, understanding them, do in fact enjoy better outcomes such as improved blood pressure control, diabetes care or reduced time off work. Anecdotally patients seem to have better compliance of treatment and we have many testimonials from patients describing their positive experiences. Such evidence may become available as more patients sign up.”

What are the risks?

Amir feels his patients are more in control of their health and care and, at least anecdotally, there seem to be some benefits. But are there any downsides?

“We take security and privacy very seriously. The software requires patients to register using their pin numbers for the service and then use passwords to get access to their records. This seems acceptable to the patients. We have not had any data breaches to date. We offer advice for patients to help them understand these issues better.”

“Very few patients ring the surgery because they do not understand something and we have not been sued for anything as a result of giving patients access to their records. In fact we are still waiting for our first complaint and that’s after offering the service for over 7 years. Currently over 2650 patients, 23% of our registered patient population, have access to their records. Records sharing is safe and does not increase litigation.”

“Every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves.

“It does take some time for patients to sign up for online services, and we do have an explicit consent process. Patients are asked to get their pin numbers from the receptionist, look at some of the support material which explains what records access is, and then complete an online questionnaire which confirms their understanding of the issues. Their request then has to be processed which takes about 10 minutes per patient.”

“It is a journey of discovery for patient and clinician so that every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves. Paradoxically, this seems to lead to a reduction in anxiety because patients, carers and family can check what has been said, see that the practice has done what it agreed to do, gain a better understanding of their health and improve their health literacy – patients worry less as a result.”

Amir’s practice offers the service for free to patients, although there is no funding in the UK to support practices to engage with their patients online. Amir: “Our implementation using the practice-based web portal has required the practice to provide its own resources. The current strategy locally has been for the market to drive innovation, which has failed completely. Funding will need to be made available to encourage innovation and enable stretched practices to invest in such tools to gain maximum benefit and to scale this.”

Tips

The UK Royal College of General Practitioners has published a guide titled Enabling patients to access electronic medical records. A guide for health professionals. Amir recommends this to anyone who is interested in setting up a similar system.

“My hope is that one day all people in the world will be able to do this. This is the future of healthcare and it is happening now! See how others are doing it, such as in the UK: PatientView or in America: Kaiser Permanente and OpenNotes.”

“I use my twitter account to share experiences with others.

“It is not easy and it takes time, resources and effort. Build links with others and collaborate with them to share experience and knowledge. Build a practice-based web portal such as ours, which helps to engage with patients and provides a mechanism of informing, signposting, engaging and empowering patients and their carers. Engage on twitter and social media – there is a great deal of interest. I use my twitter account to share experiences with others.”

“Listen to your patients and staff. Work with them and develop a strategy and a plan. Most importantly get on and do it. Don’t procrastinate or worry about what might happen – instead think about the opportunities and consequences of enabling patients to access their records and understand them.”

“My practice manager Wendy Smallwood and the patient chairs of our patient participation groups Ingrid Brindle and Eleanor Simmons are stars!”

Follow Dr Amir Hannan on Twitter.

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?

Is your organisation ready for social media?

Social media is here to stay. A lot of registrars and young doctors have one or more social media accounts, and I have yet to meet a medical student who is not on Facebook. Patients are already sharing online (health) information via Facebook, Twitter and other social media accounts – so sooner or later health professionals will need to decide whether or not to participate.

Potential benefits

Social media is increasingly used for medical education, and sharing knowledge and information such as tips, resources, literature and links. It’s also useful to build an online community. Clinics can share health information and other practical information.

Social media is more interactive than a website and you can reach a wider audience in real-time. Another benefit is the value of health promotion and lifting the profile of a medical practice or organisation. I’d like to mention the use of blogs, pictures and videos. I find they are a great way to communicate a message, and I use my social media accounts to let my followers know when I’ve posted something new.

Make the most of social media

Organisations need to be prepared to put aside time to manage their online presence, and there is no easy way out here. It takes time to post useful material and interact with others. Social media is a two-way street and not just another promotional channel. If you use social media for branding or promotional purposes only, you may lose followers.

Your online presence should have a consistent approach. Too many organisations set up a Facebook account without first developing a clearly defined strategy. It is recommended to take some time to plan and figure out the purpose of the social media campaign, which medium to focus on, and how to keep it sustainable and current. This usually requires a motivated person within the organisation.

Preparation is key, and implementing a social media policy should be part of the preparation. Some things to include in the policy are, for example, how to respond to negative feedback and/or complaints received via social media; and how to comply with AHPRA regulations.

The AMA has a useful document that outlines the risks. I also felt that the social media workshops organised by MDA National are an excellent way to become familiar with the common pitfalls.

Is social media for you?

Due to the time commitment, and the effort it takes to set up and maintain social media accounts, it may not be ideal for everyone.

For those who want to contribute to online health promotion or interact and share health information with their patients or other health professionals, social media is not without risks, but it can be an effective tool if used wisely.

This article appeared in MDA’s Defence Update in April 2014. Original title: ‘Social media in modern medicine’.

The PCEHR: Moving forward

I can confirm that the Government is not going to build a massive data repository. We don’t believe it would deliver any additional benefits to clinicians or patients – and it creates unnecessary risks (~Nicola Roxon)

I’ve studied the PCEHR but I’m still not sure what the government has built and for what purposes. I was always under the impression that the PCEHR was designed to assist clinicians to improve patient care through better data flow. But this may not be the case.

The recent resignation of NEHTA’s top National Clinical Leads is an ominous sign. If the Department of Health does not start sharing ownership of the PCEHR soon and improve governance of the system, the PCEHR will fail. Here’s a quick rundown of the issues and how to move forward.

Legal issues

A first glance at the PCEHR Act 2012 seems to confirm that the PCEHR is built with clinicians in mind, as its four purposes are clinical in nature:

  • To help overcome fragmentation of health information
  • To improve the availability and quality of health information
  • To reduce the occurrence of adverse medical events and the duplication of treatment
  • To improve the coordination and quality of healthcare provided to consumers by different healthcare providers

So far so good. But the Act is 93 pages long and I could find at least five other ‘non-official’ purposes of the PCEHR spread out throughout the Act:

  • Law enforcement purposes
  • Health provider indemnity insurance cover purposes
  • Research
  • Public health purposes
  • Other purposes authorised by law

And this is where the concerns begin. These ‘non-official’ purposes are not directly related to the care doctors provide to their patients. In general, one would say that patients and clinicians have to give informed consent before their health information can be used for research or other purposes. It seems informed consent is missing here.

Contractual flaws

Combine this with certain clauses in the one-sided PCEHR participation agreement and you’ll forgive me for thinking that the government, contrary to Roxon’s reassuring words, has built a massive data repository:  Once clinicians sign the agreement, they grant the Department of Health and Ageing a perpetual, irrevocable, royalty-free and license-fee free, worldwide, non-exclusive license (including a right to sub-license) to use all material they have uploaded to the PCEHR.

Those who think that you can always opt out are mistaken. Even if health care organisations or practices cancel the participation agreement, seven of the fourteen clauses survive termination, including clauses regarding liability. It is good to know that the government will continue to use the information after cancellation by a clinician or consumer for up to 130 years.

Another concern is the fact that the Minister may make or change PCEHR rules without legislation, and the Department of Health can change the participation agreement at any time without the need for input from clinicians. We thought the After-Hours and PIP contracts by Medicare Locals were a disaster, but this agreement is possibly worse.

Other problems

By now it is obvious that Clinical Leads and professional organisations have not been involved in many important decisions. There is a range of other issues, which I won’t discuss here in detail, including technical software glitches and the absence of MBS item numbers. Under the PCEHR Act 2012, all clinicians are appear to be seen as employees, which could be a problem as many doctors may be employed as contractors for various reasons.

Moving forward

If the PCEHR can be used for data mining, legal purposes, insurance purposes etc, then that is fine, but, I would strongly advise the profession to stay clear from it. If however we agree, that the PCEHR is a clinical tool, then clinicians must be involved.

What we need first of all 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? A proper, transparent, independent governance structure with specific executive authority should be formed. This PCEHR Board should include members from professional and consumer organisations and act as a watchdog over the PCEHR. Any changes to the rules require a consultative process with professional bodies including AMA and RACGP before the Board can sign off. The current PCEHR Advisory Committee and Council are not fulfilling these criteria at the moment.

Consumers should know exactly what happens with their data after they have visited a health care professional and who has access to their information. The purposes of the PCEHR must be clear and agreed upon by all stakeholders. Clinicians own the rights of the data they create and upload, there is no need to grant the government a perpetual irrevocable license to use this data.

The PCEHR Act 2012 and the participation contract must both be reviewed and made 100% acceptable to clinicians and 100% opt-out must be possible for clinicians and consumers at all times.

This will take time, but if we don’t start now there is no hope for the PCEHR.

This article has been published in Medicus, the journal of the AMA(WA)

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.

Social media in healthcare: Do’s and don’ts

Facebook in health care
Image: pixabay.com

‘Reputation management’ was the topic of an article in the careers-section of this month’s Medical Journal of Australia. As I have blogged about reputation management before I was asked a few questions about the way my practice has used Facebook.

I think Facebook and other social media have the potential to improve communication with our patients and colleagues and make healthcare more transparent – if used wisely of course.

Unfortunately the Australian Health Practitioner Regulation Agency (AHPRA) has scared the healthcare community with their social media guidelines. Doctors are now being told by medical defence organisations to be even more careful with social media, but I’m not sure I agree with the advice given.

Do’s & don’ts

Here are the do’s and don’ts as mentioned in the MJA article:

  • “Do allow likes and direct messaging on the practice Facebook page, but don’t allow comments. This will avoid any dangers associated with comments classed as testimonials by AHPRA. It also avoids problems such as bullying that may occur when comments are made about other comments.”
  • “Don’t respond to negative remarks online, as it risks falling into the category of unprofessional conduct if brought before the medical board.”
  • “Don’t befriend patients on Facebook if you are a metropolitan practice, Avant’s Sophie Pennington advises, so as to keep some professional distance. She says that in regional and rural areas it can be unrealistic to have this separation.”
  • “Do link your Facebook page to your website, LinkedIn and any other profiles you have set up online. This will help to ensure that these options appear higher on the search-page listings when others look for your name.”
  • “Don’t google yourself!”

Negative vs positive feedback

I think negative comments online are a great opportunity to discuss hot topics (such as bulk billing and doctors shortages) and to engage with the community in a meaningful way. Positive feedback by patients is wonderful and should not be discouraged, as long as it’s not used as a way to advertise health services.

Health practitioners should be supported to communicate safely online. But not allowing Facebook comments is defeating the purpose of social media.

Participation – the secret sauce of health care

The previous Christmas parties at work were always nice. We sat down and were served a nice dinner. There was nice live music. We were fed and entertained – what more can you ask for?

Last year our management team took a different approach. We were not fed. We had to prepare our own food: Select the toppings for our pizza and bake it in the wood fired pizza oven. We waited patiently in line. We were the chefs.

There was no band. We had to sing ourselves – on stage. We were the entertainment. There were sumo suits; there was a gladiator ring. It was the best Christmas party ever.

Participation is fun. It creates a sense of ownership, responsibility and improves team spirit. That’s why social media works. Social media empowers. We have become participants instead of spectators.

This is how it should be in health care. I love it how some of my patients take ownership of their health. They are actively engaged, do research, ask questions and understand their treatment. As a doctor I’m not telling them what to do, I’m just part of their team.

Participation is the secret sauce. As health care professionals we must do everything we can to encourage participation.