The Spondylitis Association of America (SAA) is the patient organisation in the USA for people like me. Its vision is of “a world free from the pain and disability of ankylosing spondylitis and related diseases.” and its mission is:
To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.
It provides great information about ongoing research, and advice from medical doctors, researchers, dieticians, physiotherapists, and more. Currently I find it the best source of the latest information for patients and carers affected by Spondyloarthritis.
So imagine my delight when I was offered the opportunity to present at the March 2023 SAA Storytellers event. Together with four other patients we shared our experiences with the Spondylitis community in the USA and many others worldwide. The whole event is on YouTube. If you want to jump to my presentation, it starts at 12:22.
Patients need carefully checked and up to date information. Especially now, as healthcare systems struggle in the aftermath of the Covid-19 pandemic, which has put a big strain on healthcare services. I believe that self-management, shared decision-making and advocating for our own needs will be essential components of effective healthcare in the future. The screen shot below gives you an idea of the wealth of resources which the organisation offers.
The RheumaCura foundation, of which I am a co-founder, aspires to a similar vision and wants to bring that focus on patient-centred research to Switzerland. We work to:
Raise awareness about the need for and value of patient-focused research in rheumatic disorders
Ensure a strong patient voice in research into rheumatic disorders
Influence the research agenda in the interest of people with rheumatic disorders.
With SAA we have great role model of how to empower and inform patients. To follow RheumaCura’s work in Switzerland, subscribe to our newsletter on our website, or follow us on LinkedIn.
In my last blog I wrote about the Swiss healthcare reform which is proposed by the Swiss Council of ministers and about a controversial measure to introduce budget limits to outpatient healthcare, putting expenditure limits on treatment. The details are explained in my last blog. This measure is almost universally opposed by those affected: by patients, doctors, insurers and industry.
The proposals were presented to parliament in Spring. This blog title photo was published on Twitter by Michel Guillaume correspondent for the Federal parliament for the Swiss newspaper “Le Temps” and shows attendance at the parliamentary session on 31.05.2022. It documents the involvement and engagement, or rather lack of it, of Swiss parliamentarians to discuss one of the most important issues for citizens and society – health reform to create a healthcare system that delivers the best care for all in society. As Michel Guillaume of Le Temps reported, not even ¼ of parliamentarians attended the debate. Against this background of indifference, the law was duly passed on 07.09.2022, the Federal Council adopted the legislative bill to amend the health insurance legislation.
The approved strategy overlooks many other opportunities to save costs and improve the quality of care. In particular it ignores the cost-saving opportunities presented by listening to patients – something that I have written about in this and other blogs. These would be considerable — if the right incentives and structures are made available.
Patients at the centre of healthcare
Reform should put patients at the centre of healthcare and create the conditions for the system to prepare for future challenges and opportunities. Politicians seem to see the Swiss health system as a fiscal burden, which is managed by cost cutting efforts and budget restrictions. In my view an effective and efficient health system is an investment into the workforce as a pre-requisite of a flourishing and equitable economy. I do not dispute that there are enormous cost inefficiencies in the Swiss system. Anyone using the system is frequently confronted by them. The government’s reform efforts seem to have identified the problem to be doctors carrying out medically unjustified treatments and overprescribing to outpatients, who by implication do not really need the treatment and are perhaps just making it up. Is this really the root cause of the problems?
Like most people affected by chronic diseases I go to the doctor relatively often and I take expensive medication. Maybe budget restrictions will result in my doctor limiting my healthcare, and thus reducing the direct costs of my treatment as an outpatient. But chronic illnesses also cause indirect costs, meaning the loss of productivity of patients and their families due to illness. There have been times when I couldn’t walk to the local shop, I couldn’t sleep, I couldn’t work. In total, I have spent five years of my life collecting unemployment benefit. I now work part-time.
My situation is not exceptional. There are thousands of people who are living this way. If the outpatient services are restricted, which enable people like me to get back to a normal life, indirect health costs and the associated misery and hardship of the affected patients may increase. And these costs are not negligible. As the graph below shows, the indirect costs of musculoskeletal disease are much higher than the direct costs of outpatient treatment. Let’s look at this in more detail.
Health costs are not caused by doctors!
In Switzerland 80% of health costs are due to chronic, or non-communicable diseases (NDCs) – in normal times outside the Covid-19 pandemic. The four largest cost drivers are shown here with direct costs shaded purple and the indirect costs mentioned above and shaded turquoise. The largest disease group are the musculoskeletal disorders. It is apparent that the total indirect costs for the four most costly diseases are higher than their direct costs. These figures were last published in 2011. According to the Federal Office of Public Health (FOPH), the costs of NDCs in Switzerland increased by a further 28% between 2011 and 2019.
The new measures will restrict outpatient health care, but they do not address the area where the most costs are incurred: namely indirect costs. Instead, the measures will almost certainly reduce the quality of care and restrict patient choice, which may lead to higher indirect costs. Furthermore, they will result in higher administrative costs, because of the paperwork required from medical staff to prove that they are not overspending. This may well lead to undesirable evasive manoeuvres and side effects…. What, for example, will be the effect of these bureaucratic measures and red tape on the motivation of doctors and nursing staff, many of whom are already demoralised by over two strenuous years of the pandemic?
Patients Know Best!
My doctors want the best for me. They have enormous expertise and know a lot about my conditions. But I also know a lot about myself because I live with my illnesses 24/7. Especially with chronic patients with multimorbidity, no clinician can ever acquire this knowledge if she/he sees a patient perhaps 1-2 times a year.
Healthcare has a century-long tradition of patriarchy and not listening to its users. Think about it: in what other industries are consumers not consulted about their needs and wants? I started writing this blog over 5 years ago because it seemed the best way to get my voice as a patient heard. Since then, the Swiss National Science Fund (SNSF) has begun funding some medical research projects, where patients must be involved. The Swiss Clinical Trials Organisation (SCTO) has started creating resources about PPI (patient and public involvement) in clinical medical research. The Swiss Patient Organisation SPO is establishing an advisory Patient Council consisting of patients. Other patient organisations are taking similar initiatives, although these patients are not as yet embedded in decision-making organs. Patient-led organisations are almost unknown in Switzerland.RheumaCura Foundation, which I co-founded last year, is one of the first.
In public health commissions, which advise government, the inclusion of patient representation is becoming more common, although up to now the position is usually delegated to a health professional, rather than a patient with lived-experience. If a politician wanted to talk to me, I would have many questions. Two are raised by this blog:
Why are the indirect costs of healthcare not addressed in health reform?
Why aren’t the chronically ill supported in such a way that they use fewer health services, can work as long as possible, actively participate in society and through their earnings contribute tax revenues to government?
 These are also called non-communicable diseases and are broadly defined as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. This is opposed to acute medical conditions, which occur suddenly, have immediate or rapidly developing symptoms, and are limited in their duration, e.g. like flu.
 A call to address the indirect costs for chronically sick patients has been made using the example of cancer survivors. Françoise Meunier former president of the European Organisation for Research and Treatment of Cancer calls for action to end discrimination against cancer survivors at the workplace and financially, which leads to high indirect costs of the disease.
 Wieser (2014) defines direct costs as medical costs that are incurred directly through the expenditure of resources for the treatment of a disease (inpatient costs, outpatient costs, medication costs) and non-medical costs such as adaptation of home facilities, which was not measured in this particular study. See Wieser et al. (2014) Die Kosten der nichtübertragbaren Krankheiten in der Schweiz, Schlussbericht im Auftrag des Bundesamtes für Gesundheit.
 Wieser (2014) writes that productivity losses among patients occur in the form of reduced performance during work (presenteeism), temporary absence from work (absenteeism) or permanent absence (early retirement). In addition, productivity losses can occur due to premature death. For relatives, unpaid care (informal care) causes productivity losses.)
 Patient-led in the sense of the European Medicines Organisation (EMA)
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.
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 9th from 11 high income countries, and 3rd 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.
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.
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.
“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.
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.