I believe in research findings being available to anyone, rather than locked behind academic pay walls, so most of my work is published in open access journals. If you are having difficulty locating the full text of any of my publications feel free to send me an email.
Chamberlain is an Associate Professor in medical criminology. His book, set in the modern-day United Kingdom, addresses the question of how best to protect people in need of medical care from unsafe and unethical doctors – a question of fundamental importance to health practitioners, lawyers, policymakers, and patients and their families.
The supporting characters are familiar to anyone with more than a passing interest in healthcare: Dr Harold Shipman, the GP who murdered over 200 of his patients; Mr James Wisheart, the surgeon at the centre of the Bristol babies scandal; Baroness Margaret Thatcher with her neo-liberal opposition to professional self-regulation; two leaders of the profession – Sir Donald Irvine and and Sir Peter Rubin; and two vocal reformers by the name of Smith – Dame Janet and Dr Richard.
At its heart, this is a story about the General Medical Council and its journey “from gentleman’s club to risk-based regulation”. I don’t think I’m giving anything away by revealing that the journey is not an easy one. In an effort to ensure that every doctor is fit to practise, the GMC devotes huge energy and expense to revalidation, yet only one in ten doctors believe patients are a great deal safer as a result. New initiatives aimed at lifting the quality of care are sometimes met with ritualised compliance rather than meaningful change. Well-intentioned actions result in real harm. The most sobering passage of the book is the revelation that 96 doctors have died while facing a fitness to practise hearing since 2004, at least some of those by suicide.
But there is hope: important steps have been taken towards a more transparent and accountable system, and Chamberlain offers numerous suggestions to guide the GMC forward. Four in particular resonated with me.
First, the insight that process is just as important as outcome in assessing fairness. It does little good to conclude that a doctor acted properly and ethically if they have already been dragged through years of scrutiny and suspicion. Second, that regulation will always be a blunt instrument: whether we like it or not the opinions of peers and the culture of medicine will remain a critical influence in assessing the appropriate standard of care. Third, that perhaps it is fear rather than arrogance that leads doctors to circle the wagons around poorly performing colleagues. When each of us is only one decision from facing a disciplinary tribunal ourselves it is easy to understand how further incursions into professional autonomy might feel like a threat rather than a gain. And finally, Chamberlain alludes to the inter-relationship between regulation, risk and trust – we all want doctors to be worthy of our trust, but is ever-tighter oversight the way to reach that goal?
Throughout, I was struck by the parallels with events in Australia and New Zealand where our own healthcare scandals have propelled medical regulators into a strikingly similar journey. There is much we can learn from each other rather than walking this path alone.
My only real sadness on finishing this book was the omission of patient voice from the narrative. I would have loved to hear more about the critical role patients and their families have played in achieving regulatory reform, and their perceptions of the journey the GMC is on. After all, protection of the public is – or ought to be – any regulator’s raison d’être, and the GMC’s job won’t be done until every patient can be confident that their doctor is “good enough“.
Ultimately, this is a story only part-told. It is clear that the days when doctors were left alone to manage their own affairs are over. Yet Chamberlain hints more than once that “risk-based regulation” may only be a stop along the way towards an ideal regulatory system (and perhaps even a difficult detour?) rather than the ultimate destination. Further chapters of regulatory reform are undoubtedly yet to come. And there is still an opportunity for patients and practitioners to influence how this story ends.
The last time I worked in an emergency department I was eight months pregnant: a hopeful young doctor with a stethoscope round my neck, a bulging belly under my blue scrubs, and a newfound respect for anyone whose job requires them to be on their feet for ten hours a day.
That was a long time ago. My son is now 15. But there are some patients from that ED whose faces and stories have walked with me over the years. One of those patients was a teenager – let’s call her Paula – with shiny dark hair and eyes that showed her fear when she was struggling to breathe.
Paula had asthma, severe and poorly controlled. At least once a month – sometimes more often – two paramedics would wheel her into our emergency room on a cold metal stretcher. I would take her history a few gasping words at a time, listen to her wheezing lungs, test her blood gases, give her oxygen and nebulisers and corticosteroids, fill out another asthma management plan, write another script for preventive inhalers. Sometimes I would admit her upstairs to the inpatient medical ward. Sometimes she would be discharged home. But always I would feel the frustration of knowing that while we had fixed today’s problem, really we hadn’t fixed the problem at all.
Poet and doctor Glenn Colquhoun captures that feeling of frustration well:
That summer while I was on maternity leave, I thought about Paula often. I wondered why – despite receiving great care in a great hospital – her disease simply would not listen. I wanted to understand why Paula kept getting sick and kept coming back to the hospital. I wanted her to have her life back.
There’s a parable about three friends who are standing beside a riverbank when they see a child being swept downstream in the rushing waters. Two of the friends rush in to save the child, but another drowning child follows and then another. The third friend turns and begins to walk upstream. Her friends ask her where she’s going, when there’s such urgent rescue work to be done. She replies: “There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they’re falling in.”
There was much that I loved about my clinical work: the people I met, the colleagues I worked with. But it broke my heart to see the medical system expending so much time, and money, and care on treating people, only to send them back to the circumstances that were making them ill. I wanted to walk upstream to help build a fence at the top of the river.
So I went back to school, to do a Masters of Public Health at the University of Otago. I don’t think there’s any better cure for medical arrogance than an MPH. You spend six years at medical school working through blood, sweat, tears – and other bodily fluids – to understand diseases and tests and drugs and surgeries. Only to learn that the conditions in which people work, play and live have five times as great an impact on their health as all the pills and procedures in our medical quiver combined.
In the emergency room, Paula’s asthma was stripped of social context. Her illness, and our solutions, were contained within her skin. In contrast, when seen through a public health lens, the context of her life and her disease mattered a lot. Paula lived with her siblings in an overcrowded house that was draughty, cold, and damp. Her father smoked inside. Her mother worked two jobs, had run out of carer’s leave, and struggled to make ends meet. Paula had missed weeks of school and her chances of further education were slim. Any GP and pharmacy bills for Paula’s asthma were another expense atop a mounting pile of debts. Like Malcolm Gladwell’s Million Dollar Murray, Paula had become one of the 5 percent of patients who account for more than 50 percent of costs, because the healthcare system was only equipped to treat the symptoms of her suffering rather than the cause.
Understanding these social determinants of Paula’s illness helped a little, but it still didn’t prevent her – and others like her – falling in the fast-flowing river of chronic disease. To do that I needed to walk even further upstream. And this is where I found a somewhat surprising ally: the law. (Time to go back to school again!)
Because it turns out that many of the difficulties faced by Paula and her family are actually nested within legal rights and obligations. Chances are high that they were entitled to additional income support; that a strongly worded letter to their landlord may have achieved a warmer, drier home; that their utilities company would agree to a payment plan rather than cutting essential services.
Unsafe housing, unstable incomes, debts and fines, employment discrimination, family violence – these are all issues that may have legal solutions even though people may not identify them as such. And this is an important point: patients with legal needs will often turn to a health practitioner for help rather than a lawyer. Yet clinicians are poorly equipped to address complex social and legal needs on their own.
Health justice partnerships
So what would happen if health practitioners partnered with social workers and legal services to provide a model of wrap-around care that addressed both the disease and the determinants?
It turns out that Australia is not the first place to try such an idea. Successful health justice partnerships have been operating in the US since the early 1990s. Here in Victoria, they’ve been running for about six years now, starting with a legal clinic at the Royal Women’s Hospital now led by Linda Gyorki. Over that time we’ve seen that health justice partnerships can reorient the delivery of services to prevent both health and legal complications before they arise.
These services usually have three main components:
1) Legal advice and assistance: Patients can attend a clinic based within the hospital or health service where they receive free legal advice – hopefully before problems spiral out of control. A simple assessment tool like I-HELP can be used to identify those who might benefit (Income, Housing, Education/Employment, Legal status, Personal safety)
2) Improving healthcare systems: Health practitioners can receive training and support to identify vulnerable patients and understand ways in which the law may be able to help. Electronic health records can prompt providers to ask about issues such as domestic violence, and practitioners can become more skilled at informing patients of their rights and entitlements to services and supports. A secondary consultation service can allow health practitioners and social workers to seek advice on questions that have a legal aspect.
3) Change outside the system: Finally, patients, health practitioners, and lawyers can form a powerful alliance in addressing broader systems issues. For example, exposure of asthmatic patients to second-hand smoke is not an issue that can be solved with a one hour clinic appointment, but health justice partnerships can lend their weight to advocating for stronger tobacco control laws in our communities.
I was delighted to learn that the Legal Services Board of Victoria is funding nine more health justice initiatives in Victoria, including a youth focused service in Ballarat. These initiatives have real potential to improve the wellbeing of individuals and communities through the provision of holistic and integrated care for those in greatest need. I look back on the time I spent with Paula, and with so many other young people like her, and I wish that I knew then what I know now. I wish that Paula had received care from an organisation that understood the multifaceted nexus between health and justice; one where lawyers were seen as allies not adversaries in our efforts to provide better care.
For healthcare providers looking to review their policies on same-gender care, the Victorian Equal Opportunity and Human Rights Commission has helpfully suggested wording along the following lines (to be adapted as appropriate for the local context):
“We recognise that for cultural, religious or personal reasons you might ask to be seen by a carer of the same gender as you. Please let us know as soon as possible when making your appointment or on arrival if this is the case.
We will try to meet your needs. However, it will not always be possible to do so and we cannot guarantee a carer of your gender for every appointment, examination, consultation or procedure. For example, if it is an emergency and you need urgent medical attention, you will be treated by the available doctors who could be male or female.
If we cannot provide you with a carer of the same gender, you can ask us for another staff member of the same gender to be in the room. You can also choose to have another person, such as a relative or friend attend the appointment, examination, or consultation with you.
We will prioritise requests for same-gender care where possible for people with specific religious or cultural needs and for people who have experienced trauma.”
Unable to work, I walked the city trying to make sense of man’s capacity for cruelty. I ended up at the Wheeler Centre, a safe haven for fragile ideas and tough conversations.
A fellow lawyer, Ben Matthews, joined me. He works on understanding and preventing child abuse. I work on understanding and preventing patient harm. Neither of us are strangers to the dark side of humanity. Ben asked me why the involvement of health practitioners had hit me so hard. Does the “who” matter when the “what” is so horrific?
It’s a hard question to answer but I think the “who” does matter. Here are my embryonic thoughts on why:
Trust: Patients place their lives in the hands of health practitioners because they trust them to place the patients’ interests above their own. States gives health practitioners access to prisoners and prisoners of war because they trust them to protect basic human rights. But that trust is fragile, easily broken. How can we ask the public to trust us, to trust our profession, when among our ranks walk those who would behave with such cruelty and indifference to human suffering? In the words of Onora O’Neill “trust, in the end, is distinctive because it’s given by other people. You can’t rebuild what other people give you. You have to give them the basis for giving you their trust.”
Culture: Beyond the individuals singled out in the report other health practitioners must surely have known what was happening behind those walls, in those dark rooms. If not the precise details, enough to know something was very, very wrong. Why does it remain so hard for health practitioners to speak out about colleagues? Why do we allow our silence to be used as a shelter and a shield for colleagues who place others in harms way? Yes, these were extreme abuses. But they occurred within a culture that allowed them to persist. When will we learn that small transgressions pave the road to major violations, and that: “The standard you walk past is the standard you accept.”
Rights: Health and human rights go hand in hand. As a society we cannot have one without the other. The right to health encompasses the right to control one’s health and body, including choices about sex, and the right to be free from interference, such as the right to be free from torture and non-consensual medical treatment. It is hard to imagine a more systematic, deliberate, and sustained violation of each and every one of these rights than is described in the CIA report. And the State used the complicity of health practitioners to help commit these crimes.
Greed: Tensions between financial incentives and ethical conduct are not new to healthcare. Yet never have I seen such a bitter illustration of practitioners placing profits before care. It is reported that two health practitioners were paid over $80 million for their role in developing and implementing the CIA’s torture techniques. $80 million is a lot of money. Many health practitioners have sold out their ethics, to a much lesser degree, for a much smaller sum. What message does it send to the public when health practitioners’ principles can be bought for cold, hard cash?
Unity: In times of war and civil unrest, we look to health practitioners as a symbol of shared humanity: the Red Cross, Medicins sans Frontiers, and others give us hope that the basic human right to healthcare can transcend geopolitical borders. We rarely think of health practitioners as driving a wedge between nations, inflaming hatreds, and entrenching violence as a response to fear. When they do it feels like a profound betrayal of our profession’s values of justice and beneficence.
Regulation: Health practitioners have long enjoyed the benefits of being a highly regarded and largely self-regulating profession. But those benefits come with a price – the obligation to ensure the competence, good character, and trustworthiness of members of that profession. And that price falls upon all of us. We cannot dismiss these harms as the actions of a few rogue individuals. We cannot stand by in silence while the cloak of professionalism is used to rename rape as “rectal rehydration”; while doctors approve the frequency of waterboarding. As a profession, the actions of a few ultimately affect all of us and those we are trusted to serve
When you learn, teach. When you get, give.
– Maya Angelou
Ten years ago, I was the mother of three very small children: Finn (4), Stella (3) and Zoe (1). As anyone who has parented three pre-schoolers will understand, it was an intense and wonderful time of our life. In the ordinary course of events we would have spent that summer at home in New Zealand enjoying warm and sunny days interspersed with violent squalls of gale-force winds. (Wellington weather is a lot like parenting small children in that way.)
Instead, we found ourselves building igloos in the snow in the courtyard of an apartment building in Brookline, Massachusetts.
The woman who brought us there was a mother too, though with a very different history to mine. Born in 1837, Anna Harkness and her husband Stephen had prospered through their association with Rockerfeller’s Standard Oil. Anna became one of America’s great philanthropists, donating billions (in today’s terms) to schools and hospitals. Eventually, her generosity would extend across generations and around the world with the establishment of the Commonwealth Fund and the creation of the Harkness Fellowships.
The night I received my Harkness Fellowship, I was told by a room full of wise former Fellows that the experience would change my life. I nodded and smiled and readjusted my jacket to hide the fact that breast milk was leaking through to my dress.
What do those words even mean? For a year to change your life?
It’s taken me ten years to be able to answer that question and I’m still not sure I fully understand it. The best analogy is that my life is a patchwork quilt which, during my Fellowship year, was unpicked and remade brighter and bolder than before.
The colours and richness of the new quilt are hard to describe, but let me try to explain a dozen of the new patchwork squares that I treasure the most:
Confidence: the surprising discovery that a girl from a small town at the bottom of the world can survive and thrive at one of the most prestigious universities in the world
Opportunities: the almost magical unlocking of a door that offers entry into conversations, conferences, and communities that previously looked askance at my request for a seat at the table
Mentors: a relationship of trust and support with two of the smartest people I ever met in my life, Professors David Studdert and Ron Paterson, that has endured far beyond the end of my Fellowship
Memories: crystal clear recollections of my husband and children in a year that will never blend and blur with all the others: our first sighting of a squirrel, our first halloween, our first Maine lobster, our first Hanukkah with the family of Dr Gil Siegal
Networks: connections with a sparkling web of former Fellows spanning professions and countries and generations. Wherever I go in the US, Canada, Australia, New Zealand, the US or Europe I can be sure to find someone who will welcome me with warmth and collegiality.
Windows: a glimpse into the hearts and lives of some beautiful and generous American families who showed us that there is so much more to the US than the pop culture and politics that dominate global impressions. Thank you Amy Schwartz.
Expertise: the thrill of knowing more than anyone else in the world (for at least a little while) about a (small and rather obscure) area of health policy research.
Audacity: the courage to do things that scare me witless. Once you’ve flown around the world with three very small children, navigated LA airport, flown cross-country to Boston, and driven on the wrong side of the road in a strange city in the middle of the night to a home you’ve never seen before, other risks starts to feel less frightening.
Learnings: new techniques and frameworks for unpicking complex problems; lessons learned over a bowl of soup with Professor Ed Dauer, in a negotiation simulation with Barry Dorn, or in discussion with Atul Gawande’s brilliant research assistant
Travel: four seasons of life across 17 States, from eating clam chowder in New Hampshire in fall to watching the winter sun set over Paradise Point; from the first spring flowers in our Brookline garden to summer sea kayaking in Maine.
Hope: a belief in the ability of any one of us to touch other people’s lives through acts of kindness and generosity. I feel grateful every day for the opportunity to have met women like Jane Burns, Emma Stanton, Rachel Elliot, Claire Lemer, and Rhiannon Tudor Edwards and to have been lifted up by their passion for a healthier, happier, and fairer world.
Life moves on but sometimes the lines of time are more like spirals. This week I heard the wonderful news that Dr Jennifer Moore has been selected as New Zealand’s 2015-2016 Harkness Fellow and I will be her home-country mentor. I wish Jen and all the other new Fellows a year of wonder and discovery: the experience will change your life.
If you would like to learn more about the Harkness programme, feel free to contact me or visit the Commonwealth Fund website.
Medical regulators, such as the General Medical Council and its international peers, face a rapidly changing environment, with heightened patient expectations, new technologies, and global hyper-mobility of health practitioners raising new and challenging issues for the safe regulation of health practitioners.
In September 2014, the International Association of Medical Regulatory Authorities brought together regulators from 50 countries to discuss the future of medical regulation. Vibrant debate covered issues ranging from registration of international graduates to revalidation, from candour after harm to the costs of criminal history checks. Gradually, consensus on seven key qualities of a modern medical regulator emerged.
The first, and arguably most important, quality of a regulator is clarity about its purpose and the problems it seeks to solve. It is all too easy for a regulator to become consumed with crises, programs, and processes, and lose focus on the outcomes it is trying to achieve. Harry Cayton is among those who urge regulators to “keep it simple” with a clear eye on their overarching purpose.
At the most basic level, medical regulators exist to protect patients from harms of one type or another. In the words of Malcolm Sparrow, their core task is to identify “bads” (hazards, risks, threats, problems or harms) and control them effectively within the limits of their governing law.
But at a deeper level, a number of unresolved tensions and conflicts exist. There are balances to be struck between the privacy of individual practitioners and the right of the public to know; between quality of care and access to care in the face of workforce pressures; between addressing poorly performing outliers and shifting the mean. Clarity on the best way to resolve these tensions remains elusive.
Second, regulators must have the agility to use the right regulatory tool for the task, rather than constraining themselves to “the way it has always been done”. As Malcolm Sparrow explains, it is time to undo the dichotomy between hard and soft regulatory approaches and acknowledge that different problems need different solutions.
An agile regilatory system is one that has the capacity to respond to novel and emerging risks, such as the use of social media or the global movement of temporary medical workers. Peter Rubin notes that, historically, professions are most unhappy when they get out of step with public opinion. Regulators play an important role in helping the profession to keep step with public expectations and priorities.
In some countries, outdated legal structures restrict the regulatory options available to boards, and in this situation legislative change may be needed to support improved practice. For example, the use of mediation and other alternative dispute resolution techniques can be a timely and cost-effective alternative to formal investigation, but is not supported by some statutory frameworks. Importantly, agility does not mean throwing entire regulatory systems out each time there is a scandal, but rather having the capacity to learn, adapt and adjust.
The third quality of an effective regulator is trustworthiness. For a regulator, the answer to the Machiavellian question whether it is “better to be loved than feared or feared than loved?” is “regulators should aim to be neither loved nor feared, but trusted and respected.”
As explained by Baroness Onora O’Neill, the three critical components of trustworthiness are competence, honesty, and reliability. For patients and practitioners, regulatory systems can be daunting to access and bewildering to navigate. The current disconnect between what regulators know internally and what they disclose externally is unlikely to be sustainable in today’s world.
Competence involves addressing risks to public safety effectively in a way that supports, rather than undermines, professionalism. Honesty requires transparency and true, clear communication about how and why decisions are made. Reliability requires timely and consistent decision-making.
A willingness to question, a desire to learn, and an openness to new evidence is the fourth quality of an effective regulator. Dr Joanna Flynn speaks of a shift from being “regulatory philosophers” to “regulatory scientists” – with a focus on understanding and strengthening the evidence-base for regulatory decision-making.
The kinds of questions a regulator might ask include “What impact does revalidation have on physician performance?” “What behaviours at medical school predict future problems?” and “How can impaired practitioners most effectively be supported to return to safe practice?”
As well as a curiosity about works and why, this style of decision-making requires access to high quality data and sophisticated analytical skills. In the words of Malcolm Sparrow, it’s time for regulators to start “thinking like epidemiologists”. Where the necessary skills may not always be available in-house, partnerships with researchers may offer a valuable resource, and we can expect to see an increasing focus on the “science of regulation” over coming years.
The fifth quality of an effective regulator is the humility to recognise that none of us operate alone, that there is much to be learnt from others, and that there are some problems that regulation alone cannot solve.
At last count, there were 2,372 medical schools across 179 countries. No individual regulator can possibly maintain an intimate knowledge of the standards of each of these schools: international collaboration and cooperation to develop standards for accreditation and mutual recognition of qualifications is critical.
Other countries and other professions can offer valuable insights into regulatory best practice. In regulation, as in healthcare, some of the most innovative solutions may come from developing countries who have been able to leapfrog over traditional constraints and have learnt to do more with less.
Assistance can also come from patients themselves. The involvement of patients in regulation has become a global, unstoppable and desirable force in regulation – from feedback on individual care experiences to lay representation on boards to the involvement of experienced consumer advisors who are highly skilled at hearing and giving voice to other patients’ concerns.
The ability to make fair, independent and unbiased decisions is the sixth quality of effective regulators. In the words of Frank Montgomery, trying to regulate in a system that is captured by professional self-interest is like “fighting with a wet paper sword”.
Strong lay representation and (a reasonable degree of) independence from government are increasingly recognised as essential prerequisites for effective regulation.
An unbiased system values the perspectives of both practitioners and the public in shaping the system.
Finally, effective regulators look upstream for opportunities to prevent harm before it occurs. Regulators have traditionally been reactive – responding to harm after it has occurred. Peter Rubin is among those who argue that an ounce of prevention is worth a pound of cure: the earlier regulators can identify a problem the better the chance of remediation.
A more proactive approach favours harm-reduction over ritualistic compliance, and requires a strong focus on understanding the factors that predict a future risk of harm.
As medical practice and community expectations evolve, so too must medical regulation. A clear focus on purpose, an agility of response, a reputation for trustworthiness, the curious mind of a scientist, an attitude of humility, a commitment to unbiased decision-making, and a proactive approach to preventing harm are all qualities that will stand regulators of the future in good stead.
He argues that opposition to a progressive idea predictably falls into one of three categories:
1) Perversity: “Your idea will backfire and have the opposite effect.”
Reactionaries are not likely to launch an all out attack on that objective. Rather, they will endorse it, sincerely or otherwise, but then attempt to demonstrate that the action will produce the exact opposite of the objective being proclaimed … Everything backfires.
– A Hirschman
2) Futility: “Your idea will achieve nothing because human behaviour reverts to the status quo.”
The futility claim for whose monotonous, almost knee-jerk enunciation, I have already apologised [is that] any alleged change is, was, or will be largely … illusory as the deep structures of society remain unchanged.
– A Hirschman
Hirschman argues that these patterns of rhetoric are frequently flawed and rarely evidence-based, yet widely used by those who seek to resist the introduction of a new initiative. And indeed, in the case of plain packs, the evidence suggests that their introduction into Australia has been a resounding success for public health.
Do these categories resonate with you? Have you come across other public health policies or laws that had accusations of futility, perversity, or jeopardy levelled against them?
As a doctor, social media offers wonderful opportunities to learn, share and connect. But please remember that your professional responsibilities follow you on-line. The simplest way to stay safe from a medico-legal perspective is to remember your ABCs: