Patients and our communities are a critical partner in or out of crisis and in the quest towards more equitable, sustainable and resilient health systems

The covid-19 pandemic is affecting people’s lives around the globe and testing the resilience of health systems and social cohesion. Decision makers are trying to put in place effective control measures in an environment that is changing rapidly. The emphasis on maintaining universal health coverage and leaving no one behind is welcome (WHO). But in the rush to introduce new policies, including priority setting for acute care, patient and public consultation has largely been bypassed. It is also apparent that the crisis is highlighting gaps in healthcare that patients and carers always knew existed.

In addition to the elderly, we know that many who live with chronic health conditions, particularly multiple conditions, are at particular risk from covid-19. They are also vulnerable to any failings in the maintenance of “standard” healthcare provision. Yet, the patient voice has so far not been visible in the public discourse on the crisis, which has been framed largely in terms of public and population health. While there are general statements from policymakers on the need to protect the most vulnerable, detailed information of the level or nature of protection are scant.

Many patient advocates have taken to social media to support each other and share their worries, experience, and information in order to support others. While most patients understand that in a crisis non-urgent care, including surgery will be cancelled, hashtags such as #StopElectiveSurgery lack nuance and fail to take into account that definitions of urgency vary and patients rarely get a say in how it is defined. For some patients, postponing surgery may result in months of pain and disability. 

People living with mental illness are very vulnerable to disruption of care. Well meaning advice to healthy individuals on how to care for their mental health during lockdowns has been ubiquitous, but the voice of people living with serious mental ill health has largely been absent. For some, disruption of medication or postponement of therapy can be life-threatening. People with mental illness are also sometimes among the most marginalised in society. Impact on such patients should be factored into decision-making, and alternative ways of providing care found. Just being able to speak to someone, and not feeling left to cope alone, can be vital. 

Patients are mobilising to support each other

Patient organisations have responded to the crisis by providing their communities with guidance and advice on how to cope. Some are also working with health professionals to produce information on risks, treatment uncertainties, and trade-offs.

The European Multiple Sclerosis Platform is one example. Patients on disease-modifying therapies are worrying that their treatment may increase the risk of developing complications from covid-19, but are aware that stopping or pausing treatment may trigger disease activity. The community is currently debating whether certain treatments should be paused during the crisis. Meanwhile, some MS patients have “self-organised” using platforms such as Shift MS to collate data from government sources and trusted neurologists. Umbrella patient groups, meanwhile, are speaking up about the need for an equitable, rights-based approach to care and to integrate the views of experienced patient advocates into the response to covid-19.

Creative responses by health systems  to the crisis have already resulted in changes that patients  have hoped for many years would happen – such as virtual visits, patients and professionals using online tools to communicate information, and physicians’ access to health records from offsite. Cataloguing and assessing the impact of these changes would be valuable. 

Patients should be involved in decisions about prioritisation and in finding solutions 

A key concern for many patients is what will happen if health services are overwhelmed and “wartime” triage is implemented, as it has in some locations already. There have been reports from Italy that age has been used as a criterion to withhold the most active form of treatment, something that would appear contrary to international ethical guidance. How might decision-making and prioritisation affect those with chronic health conditions? Open discussion of this issue is essential. Ethical dilemmas about treatment allocation have already been highlighted  (see here, here and here) Patients, and the community, should be involved in these difficult discussions and decision-making processes.

One example of explicit patient involvement is the University College London/Kings College London Social Values Group led by Peter Littlejohns (former medical director at NICE), which is working on a set of ethically based principles and examples that they hope will assist clinicians in caring for patients with covid-19. This work has had significant input from at least two members of the disabled community. 

Cancer patients are at particular risk of treatment delay and discontinuation. Clarity and transparency on what is happening, why, and with what impact is urgently needed. This presents busy health professionals with considerable challenges, but as an Australian oncologist suggests in this article, the current crisis may spur better conversations with patients about the benefits, risks, and harms of treatment and the importance of making advanced care directives.

Medicine shortages are another concern for patients. Those with rheumatological conditions who are on hydroxychloroquine have been particularly worried, given the interest in this product as a possible treatment for covid-19 and the resulting stockpiling of supplies. The European lupus patients’ organisation is working with national regulators and industry to address this concern. A call for European cooperation to ensure continued and equitable access to essential medicines and equipment has been made by the European Patients’ Forum.  

The patient voice must be heard in debates about the future of our health systems 

The covid-19 crisis will have a long-term impact on all communities: not only in terms of health, but also in terms of social protection and the wider economic impact that is especially crushing on those who are already vulnerable, given the social gradient in non-communicable diseases.

In a time of crisis, draconian public health measures and uncertainty on who is or should be prioritised for care, the voice of patients and the public must be heard. It is also important that  the principle of patient and public involvement in research is maintained in the swathe of new studies being pursued. Wide consultation and involvement is not easy, but it can be done by convening virtual public groups. Those who participate in these should make every effort to collect and feed in views from disadvantaged and marginalised groups and those with communication difficulties.

While it may be hard to identify “positive” elements to this global pandemic there are, or will be opportunities emerging that need to be grasped once the immediate crisis situation gives way to a “new normal”. Our health and social systems may be profoundly changed by this, and one lesson that will surely be learnt is that patients and our communities are a critical partner in or out of crisis and in the quest towards more equitable, sustainable and resilient health systems. 

Kaisa Immonen is director of policy at the European Patients’ Forum, a cross-disease umbrella organisation with 74 member organisations across the EU, where she leads on policy and advocacy and represents EPF at international fora such as the OECD. She currently holds the patient co-chair of the European Medicines Agency’s Patients and Consumers Working Party. She is also a member of The BMJ patient panel in her personal capacity. Twitter @KaisaBxl

Contributors: Many thanks for contributions from members of The BMJ’s patient advisory panel; Sarah Markham, Mark Taylor, Dawn Richards, Michael Mittelman; and Tessa Richards from The BMJ. 

Competing interests: None declared