Patients are increasingly viewed as valued partners in medicines development and in healthcare decision-making. This trend has been visible for several years but gained momentum in 2023 – and looks set for further progress in the year ahead.

A new survey of members of the EFPIA Patient Think Tank highlights the ways in which patient engagement is becoming an established practice. The principle of working with patients to understand their perspective is increasingly well established. It is in everyone’s interests that innovation matches the needs of those whose lives we are trying to improve.

The main areas of action today are in how to make this happen across the lifecycle of medicine in a way that is compliant, effective and measurable.

Top trends in 2023

Patient engagement is fast becoming the norm. It is increasingly professional and is embedded in how many companies operate. For example, the survey highlights the role of patient engagement training in ensuring that patients are always front of mind. Some organisations are working with the EUPATI patient academy to deliver training modules or embracing e-learning platforms such as the PFMD course.

Organisations at the forefront of this movement are including all employees in this upskilling. Involving patients should be a reflex for people across industry and healthcare, rather than the focus of a single function or department.

An important element of making this happen is demonstrating the positive impact of listening to patients. To be clear, patient engagement is of material value. By setting research priorities, informing the design of clinical trials and – looking ahead – engaging with decision-makers to share robust patient experience data, patients are key actors in the healthcare ecosystem.

Several respondents to the survey reported that their organisations are actively sharing experiences with colleagues. In some cases, internal systems have been developed to communicate impactful initiatives and good practices. This helps to formalise work that has taken place on an ad hoc or less formal basis in the past.

Initiatives such as patient advocacy forums have been established to bring patients face-to-face with company leaders, giving patients a seat at the table. This reflects the extent to which patients are seen as equals in conversations about the future of medicine and healthcare. The days of viewing patients as passive beneficiaries of care are over: patients are experts in their own conditions.

Guidelines and compliance

As patient-industry dialogue becomes more systematic, one area that has attracted discussion is compliance. Companies and patient advocacy groups are collaborating under transparent and ethical frameworks. And promising initiatives by national industry associations are developing guidelines to help companies operate in a clear and positive manner, building trust in the process.

This will become increasingly important if, as the survey indicates, 2024 brings further progress in how health technology assessment (HTA) authorities engage with patients. There is growing recognition that patient experience data (PED) can help decision-makers to weigh the full benefits and costs of innovative interventions.

A key trend flagged in the survey is the need for a roadmap setting out how companies and patients should work together to develop the kinds of robust PED that HTA bodies need. Some respondents also pointed to future potential for artificial intelligence (AI) in the collection and analysis of patient data.

Spotlight on Central & Eastern Europe

One intriguing trend emerging from the survey, particularly from patient organisations, is the rising interest in patient engagement in Central & Eastern Europe. This is particularly notable as some countries in the region have been relatively slower to embrace the trend. However, there are signs that companies, patient groups and other healthcare stakeholders are coming on board.

In 2023, patients continued to move to the heart of healthcare conversations, not just in medicines development, but also in policymaking. In Slovenia, patient organisations engaged with political stakeholders – up to and including the Prime Minister – on healthcare reform. In Romania, patient advocates added their voice to the conversation on the National Health Strategy 2030, as well as the shift towards preventative approaches to health. And in Bulgaria, a Public Council on Patients’ Rights was established at state level and the Association of Research-Based Pharmaceutical Manufacturers (ARPharM) launched a capacity-building programme for patient organisations.

Of course, change takes time. But there is unprecedented willingness among patient advocates to address the future of medicines, along with patient safety, quality of care, and issues around access and equality. Respondents to the survey noted the potential for peer-to-peer learning among patient advocates, to build capacity in the region. Pan-European organisations such as EUPATI and the European Patients Forum could have a role to play here.

A time of change

Several respondents view 2024 as a time of change. Not only will there be elections at European level and, in some countries, national or regional contests, but there is an underlying shift in how patients are viewed by health systems, companies and by doctors.

Patient-centricity is becoming the focus of policy discussions and large-scale international surveys. For example, the Organisation for Economic Co-operation and Development (OECD) recently held a High-Level Forum on the Future of People-Centred Innovation and released preliminary results from PaRIS, the largest international survey of people living with chronic conditions and their experience of healthcare. Crucially, there is a change in how patients see their own role as active agents of change.

With important discussions on the horizon regarding the role of data, demographic change, health system financing, and changes to pharmaceutical legislation, the patient voice will be crucial this year and beyond.