Category: COVID-19 | Living with Spondyloarthritis

An unhealthy health care reform in Switzerland

The Swiss Federal Council plans to ration health care as part of health system reform. The immediate purpose of rationing is to reduce costs. As a patient advocate, I am adding my voice to a broad coalition who criticise this proposal as misguided.

Will rationing health care reduce financial health costs?

And how will rationing affect the costs in terms of human suffering, if it reduces the quality of care?

If you are interested to learn more, please read on…

In Switzerland health care is considered excellent, but it is also very expensive. In addition, the cost contributions for patients are high which make the system regressive: those disadvantaged by illness or low-income bear a relatively higher burden of cost than the healthy wealthy. (The wealthy are per se healthier than the poor: partly because they have the means to buy healthy food, practise sports, and visit doctors at the onset of a health problem rather than wait until it becomes more serious.)

The Swiss health system is highly commercialised – it even drives children’s hospitals towards profit-making – and fragmented, with responsibility for providing health care largely delegated to the local cantons, resulting in 26 different health systems. These systems are governed and organised by various public and private entities (Confederation, cantons, municipalities, health insurers and service providers) each of which assumes different tasks. As a result, the Swiss health system is complicated needing a costly administration to help both patients and doctors negotiate the system.

Effective governance of this complex system is further compromised by the inherently slow decision making of the Swiss political system, as well as the undue influence of private industry. For example, members of the Commissions for Social Security and Health in both the upper and lower houses of parliament attract an impressive list of lobbyists; who work in the interests of the private industries they represent, not in the interest of the public, whom the commission members are mandated to represent. Many Commission members are also active in the governing boards of health industry players creating a conflict of interest with their parliamentary mandate.

Finally, there is no independent public health institution such as the Robert Koch-Institut, as exists in Germany. The Federal Office of Public Health (FOPH) is pressured to serve political decision-makers. As an example, the responsible FOPH medical doctor for Sars-CoV-2 stated early in the pandemic that masks were unnecessary and would not protect the public. Many thought the real explanation was that there were not enough masks even for hospital workers, because regulations for reserving stockpiles had not been adhered to. Whatever the reason, the credibility of the FOPH was compromised.

Given these characteristics, I will argue that despite the passion and dedication of most health professionals, the Swiss health system primarily serves the industries that benefit from it, and not the people it should be there for: the public and specifically, patients.

The Swiss health system primarily serves the industries that benefit from it, and not the people it should be there for: the public and specifically, patients.

Info Box

A common argument against criticism of the Swiss health system is that the system is excellent and the population is satisfied. The most recent assessment by the Commonwealth Fund ranks Swiss health care overall 9^th from 11 high income countries, and 3^rd most expensive. Switzerland ranks poorly for administrative efficiency and access to care. Surveys of public satisfaction vary widely and do not always match with measures of quality, e.g. the National Health System in the UK rates highly in public esteem, but is considered very critically in Switzerland. On Swiss radio the UK system is explained, and compared with the US.

In 2019 the government published a health strategy called Health2030 which identified many of the issues faced not only by Switzerland but also by health systems worldwide: digitalisation, demographic changes, the increase of non-communicable diseases (NDCs), and rising costs of health care.

One of the proposed measures suggested by an Expert Group is legislation to enable the government to limit the growth of healthcare costs by using “expenditure targets,” i.e. budget restraints on outpatient care. The result is essentially that a target is set for the number of illnesses that can be treated in a given time period, e.g. one year, on an outpatient basis. When expenditures reach the set limit during that year, either services must be cut, waiting times must be introduced, or patients must be shifted from out-patient to in-patient care. A system of budget restrictions has been adopted in other countries e.g., in the UK and more recently in Germany.

This proposal has met with united criticism from all health partners, including the patients, medical clinicians’ association FMH, insurers and industry representatives. Consultation with patient advocacy groups has been cursory, and patients do not have the resources to campaign, which are available to other players. Here I present the patient perspective about these proposed measures. The views are my own but have been discussed with other patients and the Swiss Patients’ Organisation SPO.

Expenditure targets in health care assume that costs can be controlled and predicted. However, illness or accident are by their very nature unwelcome and unplannable events, as the Covid-19 pandemic has clearly shown. Accordingly, treatment costs can only be precisely predicted or regulated, if there is an explicit decision not to treat beyond a set target. (Stefan Felder of Basel University shows the impossibility of this approach and other shortcomings, which I do not explain here.) Nonetheless, this is the strategy: the government proposes to set a budget constraint for medical outpatient care.

Such a strategy opens frightening perspectives for patients. If one day you receive the diagnosis of cancer, you will want to be treated immediately and not wait. 10% of women worldwide suffer from breast cancer some time in their lifetime. Currently in Switzerland, when a woman is suspected of having breast cancer based on mammography, she will get a biopsy and begin treatment within two weeks of the suspected diagnosis. What if she gets a suspicious mammography in October, but the budget for that year is exhausted? Will she have to wait until January to get the biopsy or out-patient lumpectomy or radiotherapy? I, who have personally benefited from prompt care, would not want other women to be delayed because of budget restraints.

Delays in treatment may lead to poorer outcomes. As an analogy, in Switzerland (and in other countries) the Covid pandemic led to the postponement of many treatments. The future losses in years or quality of life are unknown. The consequences in terms of poorer outcomes have yet to be evaluated. The ethical dilemmas for medical staff – having to choose which patients to prioritize – were enormous. What will be the effect on the morale of medical staff when such dilemmas are built into the system, not just the result of a worldwide catastrophe?

Apart from the consequences for those needing health care, it seems unlikely that this measure will achieve long-term sustainable cost savings. Let us assume that budget constraints are introduced, medical costs reach the cost ceiling and the rationing of care kicks in. This will lead to other health care costs. In the case of cancer, it is well understood that any delay increases the risk that the cancer will spread and cannot be cured at all, or only at greater cost. In fact, this will be true for most other chronic diseases. Delaying or postponing appropriate care may or may not save costs in the short run, but it seems hard to believe that it will not reduce the quality of care and lead to poorer outcomes with costs in human suffering.

Delaying or postponing treatment may or may not save costs in the short run, but it seems hard to believe that it will not reduce the quality of care and lead to poorer outcomes with high costs in human suffering.

The government strategy also overlooks many other opportunities to save costs and improve the quality of care. The cost-saving opportunities presented by listening to patients – something that I have written about in this and other blogs – are enormous, if the right incentives and structures are made available.

Finally, chronic non communicable diseases like mine are the biggest cost factor in the Swiss health system, as the strategy Health2030 acknowledges. It seems likely that the chronically sick will be most adversely affected by this reform, perhaps creating new systemic inequities in access to health care.

In my next blogs I will examine how the chronically sick will be affected by this reform, and how patients could contribute to a health system which reducing costs without leading to poorer care outcomes.

To be continued ……

“This horror will grow mild, this darkness light”

John Milton, the English poet, wrote these lines in the 1660s in his epic poem Paradise Lost. It was a time of failed revolution, religious repression, and endemic plague sweeping through the land where there were no vaccines, effective protective measures, or intensive care units.

I am often reminded of his words, and they give me hope. Thankfully today in Switzerland few of us know the terrible suffering of those who have lost loved ones or are chronically ill as a result of the pandemic. Recent discussions have been about whether we can go skiing, or if the trams will still run. For most people SARS-CoV-2 is an inconvenience rather than a life-threatening illness. Nevertheless, the pandemic is causing huge suffering in the world, and it helps me to remember that pandemics are nothing new, that normal life will indeed return.

That’s why, in the middle of the pandemic, I and three companions launched an initiative for more patient-centred research into rheumatic and musculoskeletal diseases. In May we established a foundation called RheumaCura. You can find out more on our website.

At the time of founding RheumaCura I wondered if we shouldn’t be addressing this immediate crisis. Milton reminds me, that these times will pass, and the challenges to solve will still be there. Better treatment and finding cures for rheumatic diseases is still important and there’s much to do.

Our quest for more patient involvement in health care does perhaps have a link to the current crisis. Overcoming the pandemic is slowed because not enough people have been vaccinated. In Switzerland a vaccine is readily available for all, but a significant proportion of the population do not want it. This may be now leading to an unparalleled health crisis in Switzerland, which according to the health experts would be entirely avoidable. If we’ve learned one thing from Covid-19, it’s that the public health authorities are powerless to beat the pandemic if the people do not support their initiatives.

The reasons why people refuse vaccination are complex, but one important aspect must surely be trust. Mike Ryan, head of the health emergencies program at the World Health Organization stated recently: “What’s shocked me most in this pandemic has been that absence or loss of trust,” he said of people’s unwillingness to follow the advice of public health leaders and the containment policies set out by governments.

People who don’t have confidence in health experts or substantiated scientific evidence, or democratically elected government authorities, or the media, will not have faith in information provided by these sources. They succumb to fears without any scientific basis. The American scientific journalist, Tara Haelle, writes thought provokingly about the reasons for vaccination hesitancy, about its long history, and why nobody should be surprised.

However, even among the vaccinated majority, a common perception is that health care is strongly influenced by the pharmaceutical industry, health care providers such as gigantic hospitals, and corporatist bodies such as the associations of health insurers. The Swiss system is highly complex, hierarchical, and not easily understood by outsiders. Patients often feel like objects in a huge and powerful industry, where they are by definition vulnerable. More trust and cooperation could be generated in the health service if it were closer to its citizens. An obvious way to do this would be to listen to and involve them more, and enable them to be more active.

A health care system in which the patient’s voice is heard at all levels would provide better care, and furthermore, it would also increase trust and encourage compliance with public health care advice. Patient compliance with health care advice is always essential for the best outcome, and we have never seen it so clearly as in the pandemic.

Read more about our vision and work on the RheumaCura website

Milton, J (1674), Paradise Lost (2nd ed.), London: S. Simmons

Sunset in Bern — “This darkness light” Reflections on the Covid-19 pandemic

The Covid Jab – a surprisingly emotional experience

The whole world is talking about it. Charts graph its progress. Touted as one of the greatest achievements of mankind. Yet many people reject it and seem to fear it even more than Covid-19.

The title of my blog is a bit of a give-away. Yes, this blog is about the Covid-19 vaccines, or rather my Covid-19 vaccine, which I got this morning, exactly one year after the Swiss government announced the “extraordinary situation” and put the nation into a semi-lockdown.

As soon as I learnt that where I live, people in my risk group could register for a vaccine, I did so. The delays in rolling out the vaccine had made me impatient. The current combination of increasing case numbers and political pressures in Switzerland to relax restrictions and open up the economy fill me with dread. In fact, compared with most other European countries, Switzerland has not imposed great restrictions on its people, and it was nice to be able to venture into the alps on several occasions this year. On the other hand, excess mortality has been high. I often felt that the wishes of the majority to go to restaurants carry relatively more weight in Switzerland, than the wishes of the minority not to get Covid-19.

I had to wait for one week before my vaccine, and it was long week. I knew that I should stay @home and keep safe, but the weather was so nice…. So, I went out, and then feared developing symptoms at the last minute. The day before the vaccine I felt happier than I had for a long time. On the day itself, I nearly got on the wrong train, nearly got out at the wrong station, thought that I’d forgotten some important documents, found I hadn’t, but still couldn’t find them in my bag, when I got to the hospital.

At the vaccination centre most people were elderly. The woman next to me in the waiting room was young and very nervous like me. A man in a white coat asked me for proof of eligibility. Then a woman in blue – her gloves exactly matching my blouse (see photo above) invited me to follow her. She was so kind! My nerves disappeared instantly. She said she had to ask me four questions, and held up five fingers. We laughed.

Seeing smiling people get the jab on TV I always thought that they were being rather brave. They were not. This jab was not just painless, I didn’t even feel it. However, the woman who vaccinated me said that I will feel it soon, just not today.

After waiting for a few minutes to make sure that I didn’t have an allergic reaction, I left the hospital. The young woman from the waiting room left with me. She started crying. I felt tears of relief as well.

One year of waiting and helplessness, of fear for oneself and loved ones, of sadness for the losses and pain of others. But it was also a year of amazement at all that we have learned about viruses, of frustration at politicians in denial, of anger about the inequalities that Covid-19 has revealed across and within nations. And finally a year of despairing at the ineptitude of leaders, who do not leave the playgrounds of party politics to collaborate for sustainable solutions for the common good.

And now something has changed. I have been the recipient of a vaccine against Covid-19. In one year we have a miracle for humanity, created by some of the most dedicated and brilliant people on the planet. Approved, produced, distributed and administered by the combined efforts of thousands more people. And the result is that today I could travel to a regional hospital in Switzerland to be vaccinated by the last person in this gigantic chain of genius, a kind woman wearing blue gloves.

With this vaccine, I am no longer in danger of becoming seriously ill, burdening the health system, or causing worry to my family and friends. In the light of the last year, I feel today that I am no longer part of the problem. Instead, in some sense I have become a part of the solution. In the UK and US people are already feeling more optimistic. As vaccination rates increase, Covid-19 case rates decrease. It’s not the whole solution, but surely a big part of it, and it’s nice to know that very soon, it will be unlikely that I will get Covid-19 and infect anybody else.

In a survey conducted in January this year on behalf of the Swiss Broadcasting Corporation 41% of the participants said they would be willing to get vaccinated immediately. That rate seems to be increasing, but it still isn’t enough. Even before the emergence of more infectious variants the WHO predicted that 60-70% immunity is necessary to break transmission. We need vaccine supplies for all, efficient logistics to administer them, but above all we need leaders with integrity and courage who can present the arguments to the public encouraging them to protect themselves and others by getting the jab.

Or, if such leaders are lacking, maybe get some stars to do this work instead, like Elton John and Michael Caine. Such fun to watch! Maybe the Swiss Council of ministers could ask Roger Federer, Lara Gut-Behrami and DJ Bobo?

Imagine that we have effective vaccines, but because of half-hearted take-up they don’t do the trick and contain the pandemic. Imagine that despite the availability of vaccines, case levels remain high, and new variants develop apace.

It’s time to speak up clearly in favour of vaccination, because vaccine hesitancy could destroy the window of opportunity that scientists have created for us in the last year.

Vulnerability, a word for our times

Recently I took part in a clinical trial to help establish how my medication might affect the course of a Covid-19 infection. To start I needed to give a blood sample by pricking my finger and putting a few drops into a tiny vial. After reading the instructions and laying out the equipment, I pricked my finger and held it over the vial. The fine motor skills in my hands are not good. In one hand I have a condition called CRPS (complex regional pain syndrome), which means that my hand can be stiff and clumsy. My finger was bleeding, and the blood seemed to go everywhere, except into the vial. I kept shaking and squeezing my finger, and the result was more blood smeared around and a hurting finger. In the end yours truly – the woman who has had numerous operations and unpleasant hospital treatments, loves climbing some of the most difficult peaks in Alps, injects herself every week for years, – started crying. This meant that I couldn’t see what I was doing anymore. So I gave up.

What happened? Suddenly I had felt completely overwhelmed by this situation. I want to support medical research, but I felt crushed by this small event: a hopeless and helpless person with incurable conditions, who can’t even prick her finger.

Was my reaction in some way related to the pandemic? The suffering caused by the Corona virus, including the restrictions placed on my own life, is a misery. Was my crying related to these months of restrictions, the tiredness we are all feeling and the horror at the global suffering. The Coronavirus 2019-nCoV reminds us that nature is stronger than we are. It shows us that our efforts to control life and create certainties to make us feel safe, can disappear at any moment. That is a frightening thought.

I see parallels in the threats posed by living in the pandemic and with an incurable condition. In both cases my behaviour gives me a measure of control. I can reduce the risk from Covid-19 by following the recommendations to prevent infection. Careful self-management and taking my medication will probably keep my conditions under control. But there is no certainty in either case. Despite precautions I may still contact Covid-19, and even following medical advice my treatment may stop working as it did in 2017, or I may get another illness which endangers the existing therapy, as in 2019.

Both the pandemic and a disposition to chronic illness are expressions of the power of nature. They are best met with humility and respect. Given the current efforts, in a fairly short time science will find a way to both treat and prevent Covid-19 – normal life will return, and all will be ok – at least in rich countries like Switzerland. That’s not what most people affected by chronic diseases can expect. Our situation is not transitional. There is no light at the end of the tunnel with a vaccine. We are living on a knife edge all the time.

The word that comes into my head is vulnerability and that is what this blog is about: a reflection on what I think vulnerability is for me, how chronic conditions affects my relationship to it, and whether vulnerability is a good or bad thing for me as a patient.

According to Merrian-Webster dictionary vulnerability derives from the Latin verb vulnerare, meaning “to wound”. It means openness to attack or hurt, either physically emotionally, or mentally. In Wikipedia it “refers to the inability (of a system or a unit) to withstand the effects of a hostile environment.”

Vulnerability has so many different facets. It describes a deeply personal inner feeling, but also relationships to other people. In my inner world it starts with fear and dread about something, or maybe it’s uncertainty that overwhelms me and creates feelings of powerlessness. I feel that I’m loosing control, which make me feel defenceless, and acutely aware that I need help. That can lead to a sense of shame and pain, because I can’t manage, which leads to fear and dread…. and ends in a feeling of vulnerability. I can’t really separate cause and effect, it feels more like a circle of feelings which are deeply connected.

In my situation as a patient with chronic conditions, how people relate to me can crucially affect my vulnerability. A visit to the doctor may make me feel very vulnerable. Lots of the above factors come together. I’m going to the doctor to tell her or him about how the pain has been, or because I’m feeling ill, depressed or exhausted. I’ve come because I can’t help myself and don’t know what to do. To get help I must open myself up in the most intimate way. I tell my story, sometimes I take off my clothes and stand naked in front of her or him. Sometimes I am doing this with a person that I have never met before.

What if I do not feel empathy or interest from the person? What if the news is bad? I feel fear. If the solution seems quite simple, I’ve even felt shame for making a fuss, and on the occasions when I’ve been told that there is nothing wrong with me – except in my head – I felt misunderstood and very miserable. All in all, going to the doctor is never just a “consultation”, it always means much more. Sometimes relief, sometimes new uncertainly, more loss of control and those feelings of vulnerability come again.

Chronic disease means the loss of control and loss of health by definition. It can also mean stigma and shame. Who with chronic disease has not been confronted with the attitude that loss of health is a bit self-inflicted? “If you could only find the courage to stop your medication and follow this or that (quack) treatment, you would be cured…..bla, bla..” When people give me such advice, I wonder what moves them. Are they giving me something as an expression of compassion, or are they pushing something at me to keep me at a distance, because ill-health is a threat?

Chronic illness often leads to loss of self-esteem – not just because the chronically sick haven’t managed to keep healthy, but also because we sometimes don’t look good. We are fatigued, not always able to do things we want to. Perhaps we can no longer do the job we were trained to do, or are too tired or immobile or poor to go out and socialise, which leads to isolation, loneliness and depression, and thus even greater difficulty in finding or keeping friends. All other things being equal, chronic illness increases vulnerability.

My last reflection is whether vulnerability could have an upside. Can vulnerability help me as a patient, and be a source of strength? When I was diagnosed with Spondyloarthritis I sought the company of other sufferers through my patient organisation. I was struck by the way that some people had accepted their situation and were even thankful for it, and had integrated the condition into their being, rather than suppressed it.

I think this is what they did: If you have lost something important in your life, like being healthy, then you learn that you aren’t perfect and you never will be. If you know that limits beyond your control have been imposed and that you can’t do or have everything you want (although lifestyle coaches try to teach us that we can), then it’s also easier to be grateful for what you have and for every day when you have nothing to grumble about.

Acknowledging Spondyloarthritis means that I have to recognise my imperfection and learn to accept my limits. To do that I have to give myself a break and find compassion for myself. That act of compassion opens the door to acceptance and helps me to be the person I am without covering up.

If this understanding of myself allows me to act in a way that is congruent with my beliefs and experiences, then I can connect with others without fear of what others think, or whether I will be hurt, disappointed or fail in some way. That path to connection embraces my understanding of authenticity: showing myself in my vulnerability is showing my true self, and that allows vulnerability to become beautiful and a source of strength.

In her TED talk Brené Brown tells the story of many years of research and personal discovery to understand The Power of Vulnerability. She explains how embracing vulnerability enables people to feel worthy, which in turn gives them a strong sense of love and belonging.

If we try to avoid hurt and do not allow ourselves to be vulnerable, we put an isolating shell around us. Then we cannot show ourselves as we are and loose the opportunity to connect to those feelings of inner worth, love and belonging. The dilemma explained by Brené Brown is that we can’t selectively numb the fears that vulnerability exposes, without numbing the positive qualities as well. So if we suppress our vulnerability, we also numb feelings of joy, gratitude and love at the same time and cut ourselves off from these sources of happiness.

I feel it myself and some fellow patients have told me the same thing: the vulnerability that their conditions has brought into their lives has also heightened their ability to feel joy and gratitude, to live in the moment with love and happiness in their hearts. Vulnerability – indeed a word for our times.

Patient leadership in health care?

“We cannot rest until there are Patient CEOs in every healthcare organisation around the world” Michael Seres 1969-2020.

“We cannot rest until there are Patient CEOs in every healthcare organisation around the world” Michael Seres 1969-2020.

And now the Covid-19 crisis…. Even before the pandemic started, health systems worldwide needed reform. The challenges vary: changing dynamics of demography, rising costs and overpricing, shortages of qualified healthcare staff, false market incentives and poor governance, corruption, and fraud. The results are inadequate access, poor quality and/or high costs. The general perception is that current health systems must reform, because projected social, environmental and economic developments will make them unsustainable.

One useful learning from Covid-19 is that without the support and cooperation of the public or patients, health systems are powerless to stop this pandemic. Patients and the public will have to be part of the solution.

This is an interesting and important insight. The history of health care has been characterised by unequal relationships, or what has been called “institutionalised paternalism”. The Doctor Knows Best, presents the solution, which the patient then adopts. Since Hippocrates the patient has been the problem to be solved by a health professional in a system created and run according to this philosophy.

As an economist I have learned that the market for health care is characterised by numerous “failures” where supply and demand do not meet to produce the best outcome. One of the main problems is information asymmetry. If you buy apples on a farmers’ market, your demand for apples depends on how much you need and what you are prepared to pay for the apples on display. You can get this information. However, if your knee hurts, it’s hard to know what you need. Unfortunately, it is generally the supplier of the treatment who will give you that information. A surgeon might say you need surgery, a clinician recommends pills and a physiotherapist says you need some exercises. Each specialist will tend to recommend a solution around her or his core knowledge. How can the patient process this information and judge, which solution is best?

Therefore, when supply dictates demand, because health care professionals decide on treatment, the result may not be optimal for the patient. Another characteristic of health care, which impedes a good result, is that the patient doesn’t usually pay directly for the treatment chosen, and therefore has no incentive to look for value for money. Additionally, in many health systems, including Switzerland, salaries of senior health professions are often linked to turnover: more complicated medicine = more salary. All in all, the chances are significant that the treatment decision will be guided by other motives than the best patient outcome.

As a patient with a long and complicated medical history of chronic diseases this has been my experience on several occasions. If I am not listened to, or not taken seriously, or treated like a faulty object, terrible errors and oversights can and have occurred, which affected my health dramatically. As a patient advocate, I have also been witness to the sad stories of others, who for many different reasons have been failed by the health system.

Both approaches show weaknesses in the health care system from different perspectives, but they both point unequivocally to greater involvement of patients in decision-making. Patients are not just a “liability” in health care, but also an “asset”. They are not just the problem to be solved, they can be part of the solution.

If I think back to the way I was treated even 15 years ago, I believe that a paradigm change has started. There is way to go, but today patients are generally treated with more respect, with consideration for their feelings and acknowledgement of their suffering.

Treating patients better also opened the path to recognising that collaborative patients can contribute to their own health and well-being. A plethora of terms has emerged, which reflect these developments: “patient voice”, “lay involvement”, “patient empowerment”, “health literacy”, “patient centricity” and “shared decision-making”. Personally, I like the concept of “shared decision-making”. In health care I need the knowledge, experience and advice of a specialised health expert, but I want to share responsibility for and participate in those decisions, for which I ultimately carry the consequences. I want to be in dialogue with health professionals, who recognise that I live with my diseases 24/7, and therefore I also possess valuable knowledge and expertise in managing my care, which a health professional seeing a patient for a single consultation every few months, cannot acquire.

Health is a fine balance in an unforgiving nature

That patients can take an active role in their care is now accepted wisdom. Most health professionals make a genuine effort to meet individual expectations and needs. I hope that health care reform will also encourage, empower and educate patients themselves to rise to the opportunity of taking a more active role in their own care, rather than adopt the passive role expected of them in the traditional care model. There seems now to be consensus, that developing real dialogue would result in better care outcomes than paternalism.

Patient involvement in individual treatment such as “shared decision-making” leads to better outcomes, when it is adopted. However, health systems (as defined by the WHO “all the activities whose primary purpose is to promote, restore and/or maintain health”) are still a long way from reflecting patients’ needs. Their power structures reflect a complex interplay of many different interest groups – except the patients. Patient involvement is at most a patient council, which is generally unpaid and without formal responsibilities. Some institutions enable feedbacks, such as questionnaires, or scrutiny in the form of an Ombudsman. Current patient involvement in health systems is tokenism.

In the pandemic we must rethink. I believe that patient empowerment in health care can not only improve personal outcomes, it is the logical next step in the paradigm change needed to meet the challenges facing the health sector.

According to the WHO, Health Sector Reform involves “changing the rules of the game and the balance of power within the health sector.” One day it will seem unbelievable that health systems were once run without using the knowledge and experience of users. I believe that representatives of the patient perspective should be working alongside managerial and clinical leaders at strategic and operational level to drive change in health systems. The principles of “shared decision-making” should be applied at leadership level because patient leadership in health care would improve it, through better governance, transparency, and accountability.

This vision probably seems as absurd now, as the ideas of empowered patients were just a few decades ago. It has huge implications for the existing power structures. But it is a necessary step towards a health system where patient health and well-being is the uniting aim, and where space is made for love and compassion.

As the visionary patient leader, Michael Seres, said, “As patients we can’t wait for the system to change, we don’t have time.”

We are all patients sooner or later. In a pandemic, anybody might be in intensive care next week.

Who Patients Leaders are exactly; what would qualify them to take a role in improving health care services; how they could do this, and where this model has been implemented will be explored in my next blogs.

References for further reading

This article draws on the ideas of people who have campaigned before me. David Gilbert has written many articles about patient leadership and has inspiring ideas. He has been campaigning for recognition of the role that patients could play in health care for many years, and is one of the few people able to actually implement the changes he fights for. Amongst other things he is Patient Director at the Sussex Musculoskeletal (MSK) Partnership and author of The Patient Revolution – How we can heal the healthcare system.
He wrote a touching elegy to Michael Seres:
Remembering the patient leader and entrepreneur Michael Seres
https://blogs.bmj.com/bmj/2020/06/16/david-gilbert-on-michael-seres-three-times-as-good/

World Health Organisation (WHO) Definitions in health care:
https://www.who.int/healthsystems/hss_glossary/en/index5.html

Research report on the benefits of Patient Shared Decision Making https://www.healthcarevaluehub.org/advocate-resources/publications/consumer-benefits-patient-shared-decision-making

Looking at the roles patient leaders play and the challenges they face
https://www.hsj.co.uk/why-patient-leaders-are-the-new-kids-on-the-block/5046065.article