What health consumers want: interview with Leanne Wells

Generating consumer-led ideas to improve the health system – that’s what the Consumer Health Forum is all about, says new CEO Leanne Wells. Health consumerism around the world is changing, and Leanne sees a potential for big reforms in Australia. I asked her about a range of topics, including the Medicare rebate freeze, the RACGP draft vision for a sustainable health system, funding and the role of pharmacists.

“It is a terrific honour and challenge to be leading this organisation at a time of significant developments in the role of health consumerism globally,” she says. “I believe in a strong patient-clinician alliance.”

“Consumer leadership is as important as clinical leadership in developing modern health systems that reflect the importance of patient-centred care. We can achieve this by working together to influence policy settings, design and operation of health care.”

Consumer-led ideas

What health consumers want: intervie with Leanne Wells
Leanne Wells: “Integration has to be the name of the game given modern health care is about managing multi-morbidity and complexity.”

“Our members include a diverse range of consumer organisations as well as professional associations, researchers and individuals with an interest in health consumer affairs. Through our membership network, we reach millions of Australian consumers.”

“CHF is all about generating consumer-led ideas for a better health system. It is the pre-eminent national organisation advocating on behalf of health consumers on policy issues pertaining to Medicare, PBS and population health and on issues such as health system development, access to best available consumer-centred care and access to medications.

“CHF’s work has included research and national campaigns on rising out-of-pocket health costs and prescription medicine costs. We deal frequently with questions from media on issues such as health insurance and quality and safety in health care.”

“There is potential for significant changes in Australia’s health system, particularly in Commonwealth-financed areas such as Medicare, primary health care and mental health, at a time when there are moves to put focus on reforms to Commonwealth-State health funding issues. In all of these areas, consumer-generated ideas for a better system will be crucial to success.”

Medicare rebate freeze

“CHF has supported the RACGP and others in the campaign against the rebate freeze. Nothing should compromise good quality, comprehensive, co-ordinated patient care. I support the concept of the patient-centred healthcare home.”

“Some consumers have capacity to pay a co-payment and will do so if they feel they get value. Others simply won’t go to the doctor if they are not bulk billed – and often those who don’t go to the doctor due to cost barriers are those from lower socioeconomic circumstances which we know are associated with higher rates of complex, chronic conditions: the very conditions that need ongoing, co-ordinated care. The issue highlights the need for the MBS review and a rethink of the way we finance primary care. Both are long overdue.”

“General practices need the flexibility to be truly responsive to their patient populations

“CHF seeks funding that is determined by the right models of care, not the other way around. At the moment we’ve got a system that is largely based on fee-for-service financing to drive and, at times, limit models of care.”

“General practices need the flexibility to be truly responsive to their patient populations. The expansion of health insurance to primary practice, may offer benefits in terms of better integrated care for some. The overall impact however is likely to be negative, setting up a two-tiered health system at the primary care level where insured patients would be likely to get preferential treatment.”

“The RACGP’s draft consultation paper ‘Vision for a sustainable health system’ makes the case for an alternative blended payment model offering flexibility and autonomy to respond better to contemporary care needs. The paper would be stronger if it articulated a vision for general practice emphasising how that could be done.”

“The paper lacked consideration of aspects of integrated care and placed ‘general practice’ rather than ‘the patient’ at the centre of the health system. We would have liked the paper to place greater emphasis on the patient as partner and on the consumer benefits of team-based care as well as the other non-financial levers that can work in concert to bring about change and innovation in general practice.”

Consumers as partners

“A big challenge is for health care to be much more consumer-centred. That works best when there’s a team of professionals looking after the consumer, when there’s an open flow of information and discussion between them about the patient’s needs and how to meet them together rather than separately.”

“We want to see a patient-centred approach to providing care – not disease-centred or system-centred

“Above all else patients want professionals who see them as more than just the ‘vessel’ of a disease to be cured, or a problem to be solved. Patients want to be recognised for who they are: unique individuals with their own unique lives. We want to see a health workforce which takes a patient-centred approach to providing care – not disease-centred, not system-centred, but patient-centred.”

“The National Safety and Quality Health Service Standards have consumers as partners in care as its second standard – solid recognition that this value must become inherent to the culture and operation of health services. Primary Health Networks have a pivotal role in bringing this about.”

“Having worked with divisions of general practice and Medicare Locals since the 2000s, I remain a strong proponent of the place ‘meso’ structures like these have in the system. The Primary Health Networks have great promise as disruptive innovators in our system.”

“With their distinct boundaries, alignment with hospital networks, relationship with general practice and the knowledge they will grow about their local communities, they are well placed to work with patients and clinicians to lead service and system development and innovation.”

“But they can only do this if they have mandate, the support and participation of patients and clinicians and the financial flexibility to invest in new approaches and new models of care.”

Dysfunctional state-federal funding

“The CHF supports a single level of government taking responsibility for leadership in health policy. We are diverse country with distinct regional communities. I believe moving to a single level of government, with regional purchasers administering pooled funding, is a concept worth exploring further.”

“The only way we are going to integrate the system is by having policy set nationally, and service commissioning undertaken regionally by single entities. Integration has to be the name of the game given modern health care is about managing multi-morbidity and complexity. Removing the dysfunctional nature of state-federal funding would surely be an improvement on what we have now.”

Devaluation of general practice

“Patients need to be seen as partners in care – assets not deficits. I agree that general practice and its place in the health system has become devalued over time. It is a very efficient and effective setting in which to deliver care close to where consumers live and work.”

“I applaud the RACGP’s efforts to get general practice better recognised and valued

“I applaud the RACGP’s efforts to get general practice better recognised and valued. However, in the campaign video, the doctor is represented as the sage authority while the patients are represented as passive recipients of the doctor’s view of them and their lives.”

“The characterisation was at odds with all the evidence showing that approaches which encourage patient-centred and patient-engaged care produce better outcomes. This aspect of the doctor-patient relationship could have been better reflected.”

Pharmacists and General Practice

“CHF supports a stronger role for pharmacists in general practice in areas such as medication support. It would be in the patient’s interest for general practice to have non-dispensing pharmacists as part of the team available to advise on quality use of medicines, hopefully freeing up GPs to focus on time-consuming, complex cases requiring medical expertise.”

“Expanding the scope for dispensing pharmacists to provide medical advice in pharmacies would also be supported by CHF provided the role was strictly within the pharmacist’s qualifications, was coordinated with the patient’s GP or local GP and where necessary, the services performed in a private area. Both options are good ways to make better use of an existing valued workforce.”

Patients or consumers?

“There is a continuing debate on the patient-consumer dichotomy. We prefer the use of the word ‘consumer’ when talking in terms of the health system generally. In that context we think the word consumer more accurately expresses the non-dependent status of a citizen and customer of health services and products.”

“The word ‘patient’ is appropriate when referring to an individual under treatment of a clinician where the patient’s outcome is directly dependent on the clinician.”

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.”

Why doctors should work closer with patient organisations

Historically, campaigns against bad government health policies have been predominantly doctor-centric. And the usual government response is to divide doctors and patient organisations.

Many politicians have mastered playing the ‘greedy doctor’ card, which is an effective way of making doctors’ objections seem less trustworthy.

A while back, I interviewed the influential patient advocate Jen Morris for my blog. Ms Morris is a researcher in healthcare quality and safety at the University of Melbourne.

Patient–doctor alliance

We spoke about the untapped power of the patient–doctor alliance. She strongly feels that we can achieve so much more in Canberra if patients and doctors joined forces more often.

“At a strategic level, it’s a numbers game,” she said. “There are approximately 26,000 GPs in Australia, and about 82,000 registered medical practitioners. But there are over 23 million patients. That is an enormous bloc of voters and lobbyists to leave untapped.”

The RACGP’s ‘You’ve been targeted’ campaign earlier this year against the co-pay plan was an example of what happens if patients stand united with GPs to protect primary care. The Consumers Health Forum of Australia (CHF) issued a joint press release with the RACGP and the Australasian College for Emergency Medicine to reject the co-payment scheme. The RACGP’s change.org online petition had obtained 44,800 signatures within a week.

Other organisations including the AMA followed suit. The broad approach seemed to have an impact, first in the media and eventually in the corridors of power, and GP co-payment and extended level A consultations were dropped.

More recently, the RACGP, the Royal Australasian College of Physicians, and the CHF partnered in a joint submission to the Federal Health Minister regarding the deregulation of pharmacy locations and ownership.

Concerns

Although these are great developments, there are also concerns. What if our goals are in opposition?

Take for example the PCEHR. Patient organisations want full control of the data, which makes it less useful as a clinical tool for doctors.

Understandably, there is scepticism from both sides. Patient organisations may be wary of working with powerful medical organisations setting the agenda. Patients may feel that doctors are not genuinely interested in their opinions. Doctors on the other hand may be concerned about increasing demands and consumerism.

Morris: “It is important to remember that disagreement doesn’t only pose an obstacle in ‘patients and providers’ scenarios. Neither patients nor providers are homogeneous groups, and we do well to remember that. It is worth asking how providers approach the problem when they disagree on an issue or project, and source lessons from that.”

So, the answer lies in building trusting relationships. GPs are good at this on an individual level. It is one of the strengths of general practice. We should be doing the same at an organisational level. Working closely with patient organisations will improve the mutual understanding of our values and beliefs.

According to Ms Morris, we should be looking for common ground. More often than we acknowledge, patients and doctors are really advocating for the same outcomes. But too often, she added, we don’t take the time to really analyse where the crux of disagreement actually lies. Morris: “(…) if we find that the aims of doctors and patient organisations are so distinct as to be deemed incompatible, we should be re-evaluating those aims urgently.”

‘Them and us’

Of course, the ‘them and us’ thinking also occurs between providers. This can be confusing for patients and third parties including government organisations. For that reason, I’m a great believer in the power of United General Practice Australia. It is made up of the main GP groups, including the colleges, the rural groups, the AMA, registrars and supervisors and the divisions network. These organisations have shown a desire to collaborate and put aside their differences.

A similar structural working relationship should be developed between doctors and patient organisations. This alliance should exist not just to respond to new developments, but also to proactively set out a future course and lobby governments accordingly. It would make primary care less vulnerable to the rapidly changing preferences and priorities of the government of the day.

It is good to see the willingness from both sides to work together, and I hope it is the beginning of a fruitful collaboration in years to come. We must harness the potential power of the patient–doctor alliance to protect what’s good and, where needed, improve the care for our patients.

This article was originally published in Australian Doctor Magazine.

Why the ‘You’ve been targeted’ campaign against the co-payment was so successful

“We don’t have to engage in grand, heroic actions to participate in the process of change. Small acts, when multiplied by millions of people, can transform the world.” ~ Howard Zinn

Not many people know that the main message of one of the most successful campaigns of the Royal Australian College of General Practitioners (RACGP) against government policy was largely inspired by one patient.

At the height of all the commotion about the co-payments, patient advocate Ms Jen Morris posted a message on Twitter suggesting a different response to the government proposals: Instead of focusing the campaign on doctors, she said, we should be focusing on the consequences of the policy for patients.

We’re sorry

I used her simple but powerful message in a leaflet (see image). It said:

We’re sorry to hear your rebate will be slashed. (…) It’s not that we haven’t tried, but the Government doesn’t seem to listen to GPs. They may listen to you.”

We are sorry
The original design inspired by Ms Jen Morris.

Not long after I posted it on my blog and social media channels, the RACGP President contacted me. He wanted to include the message in a national campaign. I thought it was great that the RACGP was using social media and that they took notice of what was being said. Not long after, the You’ve been targeted campaign was unleashed by the college. The message was similar to the original, inspired by Jen Morris:

“Your rebate from Medicare will be CUT (…). We have been vocal with Government but it’s falling on deaf ears. They haven’t listened to us but they will listen to you.”

The RACGP had listened to patients and many of their members who wanted a patient-focused campaign. The You’ve been targeted approach showed that every GP surgery in Australia can be turned into a grassroots campaign office if necessary. After other groups, including the Consumers Health Forum and the AMA, increased pressure on the government, the co-payment plan was dropped.

I spoke to Ms Jen Morris and RACGP President Dr Frank Jones about the role of patient input, the use of social media and what we can learn from the remarkable campaign – as there is still a lot of work to do (for example to reverse the freeze on indexation of Medicare rebates)

A pay cut for wealthy doctors?

Morris: “I opposed the co-payment, but was concerned that the original approach adopted by doctors’ organisations misjudged the public’s values, as well as public perceptions of doctors’ wealth and social position. In the initial stages of the campaign against the proposed co-payment, doctors’ organisations, and thus media coverage, were framing it as a pay cut for doctors.”

“Misframing the situation like this made it harder for those of us opposing the changes to explain the various proposals, including Medicare rebate freezes, in a way which the public could understand. It also made it easier for the public to write the problem off as not their concern, but rather a pseudo ‘workplace relations’ issue between doctors and Medicare.”

“At the time, the public were reeling from a budget widely touted as disproportionately impacting the most vulnerable and disadvantaged people. In a social context of widespread public perception that doctors of all stripes are wealthy. So there was little public sympathy when the doctors’ lobby cried foul because the government was trying to ‘cut their pay’. There was a sense that as well-off professionals, GPs should take their fair share of the fiscal blows and ‘cop it on the chin’.”

“The government played perfectly into the combination of these two problems. By later touting the co-payment as ‘optional’, they painted GPs who chose to charge it as opting to squeeze patients rather than take a pay cut.”

‘Extremely poor policy’

Jones: “The RACGP repeatedly raised its concerns with government over many months regarding the impact of a co-payment on the general practice profession and its patients. As GPs we have an obligation to speak up and oppose any policy that will impact on our patient’s access to quality healthcare. We know that poor health policy drastically affects the ability of GPs to deliver quality patient healthcare, and this was extremely poor health policy.”

“When it became apparent the RACGP’s concerns were not gaining the traction required to influence change, we decided it was time to increase pressure. While advocacy has always been a major component of the RACGP’s work, it has recently taken a more public, contemporary approach to these efforts.”

“In the case of You’ve been targeted, this meant ensuring patients were also included in the conversation and encouraged to stand united with GPs to protect primary healthcare in Australia. We collectively see hundreds of thousands of patients a day and knew that a campaign bringing GPs and patients together would present a strong united voice.”

You've been targeted
The succesful RACGP You’ve been targeted campaign

The strength of the campaign

Morris: “Like most public policy debates, successful campaigning against the co-payment was contingent on securing public support in a political PR contest, which means getting the public on side. I believed that re-framing the issue around patient interests was the key to changing public perceptions, and winning the PR battle.”

Jones: “The RACGP took notice of what patients were saying about the co-payment and listened to our members who were telling us they wanted a campaign that focused on how their patients would be impacted. This is what led to the creation of You’ve been targeted.”

“The response to the RACGP’s change.org online petition was a big step for the campaign, with more than 44,800 signatures obtained in less than one week. While the campaign gained momentum through protest posters, use of the social media hashtag and sending letters to MPs and this allowed for concerns to be heard, the online petition was a collective demonstration of the sheer extent of those concerns.”

“A campaign’s strength is intrinsically connected to how powerfully it resonates with its audience and You’ve been targeted hit all the right buttons in this respect campaigning on an issue that affected every single Australian, young and old.”

Novel approaches

Morris: “If doctors and patients can capitalise on common ground and present a united front from the outset, the weight of political force will rest with us.”

Jones: “In terms of closer collaboration on advocacy campaigns, the RACGP feels there will be significant opportunity to work with health consumer organisations, given the mutual priorities of better supporting patient care.”

“The RACGP has already partnered with consumer organisations including the Consumers Health Forum (CHF) with whom it produced a number of joint statements. Most recently, the RACGP and CHF partnered in a joint submission regarding the deregulation of pharmacy locations and ownership.”

“The RACGP has consumer representatives on its key committees and boards. We have a history of working with consumer groups on important issues, and will continue to do so moving forward.”

“In light of the RACGP’s recent campaign successes, we will increasingly use social media as a platform to act as a voice for Australian GPs and their patients. Social media is new age media and the RACGP is committed to keeping pace with technological advances to ensure its members are effectively represented.”

The untapped power of the patient-doctor alliance

Traditionally campaigns against poorly thought-out Government policies have predominantly been doctor-centric, and the usual Government response is to divide consumer and medical organisations.

Jen Morris is a patient advocate and researcher in healthcare quality and safety at the University of Melbourne. She feels strongly that cooperation is required if we want to make more impact in Canberra.

This makes sense. It looks like the time is right for a novel approach – and it is much needed too, as the discussion about healthcare so far has been about dollars instead of quality. What are the benefits of a patient-doctor alliance and how do we overcome our differences?

Jen Morris
Jen Morris: “If doctors and patients can capitalise on common ground and present a united front from the outset, the weight of political force will rest with us.”

The numbers game

“At a strategic level, it’s a numbers game,” says Jen Morris. “There are approximately 26,000 GPs in Australia, and about 82,000 registered medical practitioners. But there are over 23 million patients. That is an enormous bloc of voters and lobbyists to leave untapped.”

“When campaigns are too doctor-centric, that leaves this bloc ‘in play’ – sparking a spin and PR war between doctors and the government, vying for public support. But if doctors and patients can capitalise on common ground and present a united front from the outset, the weight of political force will rest with us.”

“More importantly, putting patients and their care at the centre of pro-healthcare campaigning recognises healthcare exists wholly for, and because of, patients. Sometimes, public debates amplify some of the worst features of traditional hierarchies in clinical healthcare. Authority figures argue over who knows what’s better for patients, and best represents their interests.”

“All the while, patients pushed to the sidelines quietly await a chance to speak for themselves. If we’re serious about changing the culture of paternalism in healthcare, and empowering patients, that change in approach needs to permeate right through from the consulting room to the campaign platform. ”

What if we disagree?

There may be topics where patients and health providers don’t agree, such as certain aspects about the PCEHR. This can really paralyse a project. How should we approach this?

Morris: “It is important to remember that disagreement doesn’t only pose an obstacle in ‘patients and providers’ scenarios. Neither patients nor providers are homogeneous groups, and we do well to remember that. It is worth asking how providers approach the problem when they disagree on an issue or project, and source lessons from that.”

“It’s worthwhile looking for points of common ground, and building upon those

“The possibility that some parties may disagree is not, for example, a reason to exclude likely dissenting practitioners from a committee of doctors. In the same way, it is not a reason to exclude patients from healthcare policy discussions. Moreover, the fact that patients and providers may not always agree is not a reason to close our minds to collaborating when we do.”

“We should approach such disagreement on policy and projects the way we should in any sector. That is, give relevant stakeholders of all perspectives a fair opportunity to be heard. And, where possible, try not to speak for others in lieu of them speaking for themselves first.”

“It’s worthwhile looking for points of common ground, and building upon those. More often than we acknowledge, patients and doctors are really advocating for the same outcomes. But too often we don’t take the time to really analyse where the crux of disagreement actually lies.”

“So it’s worth trying to identify when disagreement is about what the end goal should be, and when it’s about how we should best get there. That helps to clarify how the points of difference, and points to potential solutions.”

“In cases where viewpoints really do differ substantially, all parties should have the opportunity to make a case for their proposal, then let the policy and law makers evaluate those on their merits.”

Is there a will to cooperate?

Morris: “Because I don’t work for or represent a consumer organisation, I can’t speak for them with any authority. However, I will say that in my experience, there is reflexive and entrenched suspicion on both sides.”

“If we find that the aims of doctors’ and patients’ organisations are so distinct as to be deemed incompatible, we should be re-evaluating those aims urgently

“Patient organisations are concerned about being seen to endorse a situation in which doctors’ organisations dominate and speak ‘on behalf of’ patients. Because such situations hark back to unhelpful, dictatorial hierarchies which have traditionally silenced the patient voice.”

“On the other hand, doctors’ organisations have expressed concern that patients do not understand the complexities of health policy and systems, the challenges faced by practitioners, and the broader potential consequences of proposals.”

“But in my experience, if and where these issues exist, it is in working together that parties learn from each about about how they can all do better. And the result is stronger organisations, and a more robust campaign.”

“It is healthy for organisations to remain vigilant about being faithful to their purpose and mandates. However, if we find that the aims of doctors and patient organisations are so distinct as to be deemed incompatible, we should be re-evaluating those aims urgently.”

“As a patient advocate, I would be delighted to have the opportunity to campaign alongside doctors and their organisations when appropriate. And indeed, on several issues I have done just that.”

“I have the privilege of working alongside many doctors in my role, who have taught me a great deal about the everyday realities of being a doctor. And I am a better advocate as a result. I hope that working with patients and advocate affords doctors similar insights.”

Disruption in healthcare is happening (whether we like it or not)

Healthcare, and particularly medicine, are slow-moving beasts. This doesn’t mean that innovation isn’t happening. In fact, it’s happening at an alarming speed and doctors are grappling with a quickly expanding knowledge base.

But the highly regulated, traditional industry is vulnerable to external disruption, and we’re seeing more and more examples:

  • DIY tests like skin cancer apps and pap smears
  • Online script services
  • Skin checks at the pharmacy
  • Vaccination services outside medical practices
  • Medical tourism

The flip side of convenience

Disruption is not necessarily the same as innovation. Disruptive services or products are simpler and more convenient to use, but their quality is often poorer.

In healthcare, the risk of disruption is that it affects health outcomes. It may lead to fragmentation and loss of opportunistic screening. I’ll give two examples:

Example 1:  More providers does not equal better care

A busy family doesn’t have the time to visit the doctor and decides to use convenient online health services. As a result they hardly ever visit their family doctor, and if they do, their doctor does not have the complete picture as more health providers are involved in the care.

Example 2: Convenience does not equal safety

Women doing their own pap smears at home may take incorrect samples. Although avoiding the ‘stirrups’ in the doctor’s office is a big plus, the risk of avoiding an expert examination is that things get missed.

The way forward

Disruption in healthcare is happening, whether we like it or not. “Successful entrepreneurs naturally look at opportunities in terms of the jobs they can do for customers,” say the authors of this article. Although it is unlikely that the doctor can be replaced by technology, certain aspects of the healthcare process can.

I believe there are 3 ways the healthcare industry should respond to external disruption:

  1. Continue to listen to health consumers
  2. Develop our own disruption processes
  3. Communicate the strengths and qualities of our services

Marcus Tan, GP and CEO of HealthEngine said in Australian Doctor magazine: “GPs are ideally suited to lead this cultural shift. GPs are highly skilled in managing risk and uncertainty, and are well equipped to make the leaps required to innovate.”

Indeed, if we don’t do it ourselves, others will.

Doctor, do I have to stay on these medications?

This is the first article in the ‘Blogging on Demand’ series. If you have a topic you want me to blog about, feel free to send an email, contact me via social media or leave a comment below. Jen Morris picked the topic of this post. She tweeted me saying: “I’d love a GP view on polypharmacy, deprescribing & importance of reviewing and stopping treatment, not just continuing indefinitely.”

I really like this topic. I’ll explain why. It’s fair to say I have a love-hate relationship with medications. They can do a lot of good, but also cause misery. Prescribing drugs is a bit like cooking, and getting the balance of the different ingredients right an art: Use too little and your dinner guests are unimpressed, use too much and it becomes unpalatable.

There are many guidelines in medicine informing us when to use which ingredients, but unlike cooking books, they never tell when a dish should be taken out of the oven, or, in other words, when to stop treatment. This is odd, especially as patients often rightly ask: “Doctor, do I have to stay on these medications for the rest of my life?”

Here is a summary of the why, when and how to stop long-term medications – based on the limited amount of evidence available. For more information I refer to the sources mentioned below.

#1: Why stop medications?

Research shows that elderly people often feel better after their medication is discontinued. One study found that only 2% of the medications had to be restarted because the original symptoms reoccurred. This suggests that many people take medications unnecessarily.

It is estimated that up to 30% of hospital admissions for elderly patients are related to the medications they take. Reviewing the medication list periodically is therefore important, for example after the annual home medication review by the pharmacist.

#2: When to consider stopping

There may be good reasons why, after review, it is better to continue long-term medications. But there are 5 circumstances when stopping should be considered:

  1. A patient is taking multiple (more than 4) drugs
  2. An adverse drug reaction is suspected
  3. The drug doesn’t work (anymore)
  4. A patient experiences falls or cognitive decline
  5. The condition of the patient improves or worsens dramatically.

 #3: How to stop

Deprescribing can be done safely, but is not without risks. Withdrawal symptoms, rebound syndromes and reappearance of the original symptoms may occur. Medication withdrawal should be undertaken in consultation with a doctor.

The literature suggests different methods, but I particularly like the following simple 5-step approach:

  1. Prepare: Always consider the option of deprescribing at the start of a therapy, in case it is required later on.
  2. Recognise the need to stop: are any of the above mentioned 5 circumstances applicable?
  3. Prioritise one drug at a time to stop.
  4. Wean, especially benzodiazepines, opioids, beta blockers, corticosteroids, and levodopa.
  5. Monitor: Look out for withdrawal symptoms, discontinuation and rebound syndromes, reoccurrence of illness, falls, and changes in cognition and quality of life.

Research into deprescribing has mainly been done in elderly people taking multiple drugs. I believe it is not unreasonable to apply the same principles to younger people, even if they are on a smaller amount of long-term medications.

I always find it extremely satisfying if we manage to cut the number or dose of someone’s medications – and most patients seem to be equally pleased. Less is sometimes more.

Thanks to Jen Morris for the topic suggestion.

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?

Wrap-up: 3 things I have learned from #AHPRAaction

And so the AHPRA Action came to an end this week. The Medical Board announced on Wednesday it would work with the other Boards to change the advertising guidelines.

The media statement“(…) practitioners are not responsible for removing (or trying to have removed) unsolicited testimonials published on a website or in social media over which they do NOT have control.”

Hats of to the Medical Board and AHPRA for listening to the feedback. I have learned three things:

#1: We now all know the rules

The media attention and focus on the law and advertising guidelines has made the road rules clearer than ever. Testimonials mentioning clinical care & used in advertising are out, and unsolicited comments including thank-you’s are in. Of course we will have to wait for the final revision, but it seems we all know where we stand.

#2: Consumers and health care professions united

The controversial advertising guidelines united not only health professions, but also consumers and professionals. This should happen more often. Some have already raised ideas to bring the health care social media community together on a more structural basis – watch this space.

#3: Big government should involve stakeholders

Consumer health advocate Anne Cahill Lambert noticed that AHPRA had not received consumer submissions during the guidelines revision. In this Crickey Blog she wrote: “Genuine consumer participation is sometimes difficult. But it should not be dismissed out of hand because of its difficulty.”

AHPRA has already started engaging and listening via Twitter. Here’s hoping that AHPRA will genuinely engage all stakeholders during future guidelines and policy revisions – without further increases in registration fees of course.

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.