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.
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/
Coming out of our Swiss “Soft Lockdown”, for all of us who have been self-isolating or otherwise sheltering from the outside world, feels like the slow recovery from an illness. In the canton of Bern, where I live, the population has generally not been greatly affected, compared with other regions of the world. Nevertheless my belief is that we still need to be very careful. We know so little about the Corona virus, so it’s too early to make assumptions about what comes next. So now we can catch breath. It’s a good time to start thinking about other things.
The title picture is taken from my balcony on Whit Monday. For about 10 days a year my climbing rose explodes into flower and it is paradise to sit on a sunny day with a book and a cup of tea, perched above my garden, the meadows and the mountains in the background. It’s part of a healing process.
Rather than write today about emerging into the new, “normal” world, I would like to offer you a link to an interview that I gave for the TEDx Zürich , as a follow up to my TEDx talk of 2017 (which is at the top of the article, if you haven’t seen it). The interview contains some thoughts on setting personal goals, the importance of nature for health, living life on a knife edge – including the choices that we are facing in the pandemic – and above a call for change in health care by putting patients needs more clearly into the centre of endeavours.
If you’d told me in March 2019 that I wouldn’t write another blog on “arthritis and me” until 2020, I would have laughed and said you didn’t know me!
I had started two new drafts. They will be finished one day, but first I have to write about breast cancer and get that off my chest – excuse the intended pun.
“Breast cancer and me”? I mean…. that happens to others. People who are already managing chronic disorders don’t get cancer as well. Or do they?
Well yes, it seems that they do. In that sense people with chronic disorders aren’t different from anybody else. Nevertheless, most of my friends were very shocked and found it rather unfair and that I had already had my share of health issues in the last few years.
Today, looking back from these first days of 2020, I feel that apart from the fact of not being able to write any blogs or do much beyond managing the daily essentials for several months, 2019 was not such a bad year.
The year didn’t start so well and that already blocked my ability to write. In July I went for a regular Mammography as is recommended every 2-3 years for women of my age. A couple of days later the phone rang and to my surprise I was asked to come into hospital for a check. “It’s probably just a shadow,” the woman on the phone said. “It’s usually nothing. But to make sure, you should come in.” Another couple of days later I was under the ultrasound and then it seemed like endless samples were taken for biopsy using a sort of pressure gun that was held against my breast and took tiny bits of tissue. Very uncomfortable
I was asked whether I wanted the results by letter or phone. It seemed logical to get the information as soon as possible, so I opted for a phone call. This came in the early evening two days later. The doctor who had taken the samples rang me. “Good evening, Ms Safford”, she said. “Unfortunately….“ and after that I understood almost nothing. My reptilian brain, the Amygdala took over. Flight or Fight. My cognitive abilities were gone. I have since learnt from others that this is normal. It’s the shock.
A week or two later the exact diagnosis was explained to me. Luckily, I took a friend to the hospital with me, because despite my efforts to listen, I was still unable to take the information in. My friend took notes and then explained to me, I understood that the cancer had not spread. Treatment would be surgery and radiology over several weeks, but no chemotherapy. Most importantly, I would not die and could fully expect to be cured.
Surgery and radiotherapy went as planned. It was a strange experience having a disease that is considered so serious and generates so much fear, yet my own diagnosis was positive. That meant that my own feelings were that this breast cancer was much less important than the arthritis and intestinal problems that I had experienced daily for years, and for which there are no cures.
Feeling frail but well after breast cancer surgery
The hardest part of the story came after surgery. My doctors recommended that I should stop the medication for the arthritis and bowel disease, which has completely transformed my life in the last 4 years by enormously reducing the pain, inflammation and tiredness. See my post How it all started for the story of my amazing improvement . The drugs are called TNF-alpha blockers, because they block messengers in my immune system called TNF-alpha, which are thought to be malfunctioning, and are causing my illnesses.
However, it is believed that TNF-alpha normally plays an important role in the immune system by fending off cancer and destroying potential tumours. TNF stands for Tumour Necrosis Factor. So obviously, someone already diagnosed with cancer, will be recommended not to take this medication. That advice initially really devastated me, but then it sent me on an important journey to pursue my needs as a patient and not just to follow doctor’s orders. I write about that journey in the next blog… coming soon.
