Patient advocate Judith Safford argues that without the support of the public and patients, health systems are powerless to stop the pandemic.

Judith Safford is an economist, consultant and patient expert

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.

Patient empowerment in health care can not only improve personal outcomes, it is the logical next step.

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, its 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 doesnt 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 feedback, 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.

Judith Safford is an economist, who has dedicated her professional life to excellence in non-profit management. Affected by inflammatory arthritis since early adulthood, she is works as a consultant and patient expert. Her special interest is the involvement of patients in healthcare, particularly participation in medical research. She is a member of the Sciana Health Leaders Network, a TED speaker and writes a blog at arthritisandme.ch

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 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 cant wait for the system to change, we dont have time.We are all patients sooner or later. In a pandemic, anybody might be in intensive care next week.

The views expressed in this article are solely those of the author, and do not necessarily reflect the views of swissinfo.ch.

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Doctor knows best? Why patients must be part of the solution - swissinfo.ch