Patients are all different. Our bodies, preferences, circumstances and needs vary greatly. So, how can we provide the best possible care to the largest number of patients? Should healthcare providers work more closely with patient partners or should they prioritise technologies and research that allow for precise, personalised medicine? And how do life sciences innovators ensure their work will definitely improve the experience of patients? We spoke to Ghada Ibrahim and Baptiste Hurni about how we can ensure patients remain at the centre of the solutions we create for them.

Patients are no longer mere bystanders

Over the past two decades, patient interests have become more central to the healthcare ecosystem. According to Baptiste: ‘Twenty years ago, patients were spectators of their health treatment; now they are actors.’ But there is still more work to do to integrate patients into organisational bodies, as well as a need for legislative changes. Baptiste explained: ‘When a law refers to partners in the healthcare system, it currently means hospitals, doctors, insurers, and national and cantonal representatives, but not patients. We have to make sure patients are on the panels where decisions are made – they must be at the heart of everything.’

One way that patients are becoming more involved is through initiatives that ask for their feedback. For example, there is widespread interest in patient-reported outcome measures (PROMs), which help measure the results of healthcare based on what matters to the patient, such as how they feel after treatment. There are also patient-reported experience measures (PREMs), which measure the patient’s experience with the healthcare system, such as whether they felt listened to and respected. These self-reporting measurements provide a patient-centric view of healthcare and can be considered as an indicator of healthcare quality.

However, Ghada shared that there are challenges to overcome: ‘It’s not always possible for patients to transfer knowledge and share best practices; the methodologies need to be carefully designed to make them accessible to all to ensure that no voices are lost.’ For Ghada, inconsistent approaches to patient participation are also hindering its success: ‘Despite the growth of public involvement and engagement initiatives around the world, it remains ad hoc at best. Integration remains elusive and non-uniform, both across healthcare systems and within single institutions. We need broad acceptance and a shared understanding to enable effective implementation.’ A case in point is Switzerland’s unique cantonal and federal landscape – as well as the three major national languages – which pose quite a challenge for standardisation and harmonisation. Ghada suggested the next step should be to develop guidelines in Switzerland that align with the European and international standards already in place.

Of course, it’s vital that patients are included in the development of these guidelines. National political organisations, like l’Organisation suisse des patients and la Fédération suisse des patients, represent patients and help their voices to be heard. Baptiste feels they are vital for patient empowerment: ‘It’s very important to represent patients and their interests in the political arena. These patient organisations aren’t strong enough yet, but they still perform very important functions, such as influencing bills, supplying advice and providing key information.’

The right to choose your own treatment

It’s natural for patients to want to influence their treatment journeys, and there is a growing trend towards shared decision-making in healthcare. According to Ghada, more patients want to opt for therapeutic plans that are not only effective but also aligned with their individual preferences, constraints and lifestyles: ‘Such plans can lead to improved patient outcomes. Shared decision-making can empower patients and help them abide by therapeutic decisions – patients are more likely to follow through when they’ve been involved in making an informed, clear and suitable plan.’

Of course, patients need to work in partnership with health experts. Evidencebased practice that builds on science and clinical expertise, while also considering patient preferences, depends on successful collaboration between patients and healthcare professionals. Ghada clarified: ‘The objectives need to be quality of care, patient satisfaction and quality of life. From a patient perspective, this means an active participatory mindset and well-informed decision-making.’

Today, many precision medicine studies incorporate PROMs, which allow the patient to express their treatment preferences, assess side effects and address quality of life issues. This input means clinical decisions can be aligned with individual patient needs. For example, in early breast cancer treatment, patients and clinicians can discuss whether to proceed with chemotherapy based on the results of short-term endocrine therapy. Ghada explained: ‘Empowering patients by giving them options tailored to their specific tumour response enables informed choices about chemotherapy and side effects – it’s an integral part of precision oncology.’

The benefits (and risks) of patient data and new technologies

This sort of personalised healthcare relies upon new techniques, but – as with any new player in the healthcare arena – new technology should be embraced with caution. Sound methodology and robust regulation are needed, as there are ethical questions around privacy, data security, data sharing and data ownership. In short, precision medicine relies on patients trusting that the healthcare system will protect their personal health information.

At the same time, data needs to be shared with patients in a useful way. According to Baptiste, ‘To be fully involved in their own healthcare, patients must have access to information.’ Switzerland’s dossier electronique du patient enables patients to be more empowered, although Baptiste acknowledged that it needs to be made more accessible and user-friendly.

Ghada also pointed to potential biases that should be carefully considered when evaluating data sets that may not be representative of diverse populations. For example, AI tools that have been developed and tested on white people are often less accurate for people of other ethnicities. The bias in healthcare technologies created by this lack of diversity poses ethical concerns that will intensify unless appropriate mechanisms are put in place. But on the other hand, data collection enables the analysis of vast amounts of data, including genetic information and lifestyle habits, which can generate much better health outcomes for specific diseases, demographics and ethnicities overall.

And, of course, the bigger picture must always be considered. Although personalised healthcare through technology has enormous benefits for patients wishing to participate actively in their individual healthcare journeys, a data- or technology-driven recommendation may not align with a patient’s overall health, values, lifestyle and cultural context.

Innovating for patients

It’s vital that patients’ needs and priorities are considered by life sciences researchers and innovators, but when and how should their views be gathered? Baptiste posited that patients should be involved at every stage: ‘Innovation will only work if it’s patient-friendly. The earlier the patient is involved, the higher the probability that the technology will be used and be useful for the healthcare system, which of course benefits the company behind it too.’

Likewise, to Ghada, it seems counterintuitive for life sciences researchers and companies to address healthcare solutions without involving those impacted by the relevant healthcare condition, disease or lifestyle: ‘Not only is it just and ethical to involve relevant and pertinent patient communities in the design – and longterm assessments and testing – of projects, but patient involvement from the early stages of the concept and throughout has been shown to accelerate research and innovation.’

Nonetheless, Baptiste acknowledged that the practicalities of connecting life sciences innovators to relevant patients can be complex and need to be reviewed: ‘Patient organisations don’t have the funds to provide lists of people who could get involved in R&D.’

In addition, Ghada highlighted other potential barriers, such as remuneration for patient involvement and engagement. However, she believes that companies and researchers must change their mindset and get creative about how to involve patients to achieve better outcomes: ‘It’s crucial to acknowledge the wealth of resources that already exist in other healthcare sectors, such as research and patient involvement initiatives at industry level. Moreover, we can draw on existing global resources and tools, while considering particular country settings and contexts.’ (For examples of these resources, see the box on the next page.)

What are the priorities for better patient outcomes?

Although precision medicine and big data clearly offer new treatment opportunities, the healthcare system faces a key challenge: how do we connect life science innovators, researchers, healthcare providers and patients in a meaningful way? Dialogue and exchange with all pertinent stakeholders, including regulators and insurers, is needed to better assess the impact of personalised methods in the overall healthcare system. To progress, we need to continuously evaluate and assess relevant metrics in personalised health research, measuring what really matters to patients. By keeping patients involved at every step, healthcare can become more personalised, effective and accessible.