Future health systems should have people-centricity as their driving force, delivering an integrated continuum of care and empowering patients as active partners.

The principle that healthcare should be patient- or people-centred sounds simple and intuitive, and it enjoys high-level policy support. However, it has yet to be applied to health systems as a whole in a comprehensive manner.

We believe that health systems can only work at full power if all their components are orientated toward meeting people’s needs, improving their health and experiences of healthcare according to what matters most to them. Every service, technology, system, policy and payment should pull in the same people-centric direction.

In short, people-centricity should be the driving force throughout the entire healthcare system.

Integrated people-centric systems

Integration is the key to achieving people-centricity.

Present health systems are not people-centred primarily because health services and budgets are fragmented according to disease specialties and provider sectors (e.g. primary, hospital and long-term care).

This is particularly problematic for patients with multiple chronic diseases, who typically need care from many different healthcare providers. Often these services do not co-ordinate well with each other, leaving patients to navigate a complicated, discontinuous system. Fragmentation also impairs efficiency, because of duplication, delays and unnecessary care. It can also lead to under-treatment when patients “fall through the gaps” between providers.

Separated, siloed budgets for different health services also prevent health systems from investing in one area to reap benefits and cost savings in other areas (See Innovation).

We support a holistic, fully people-centric approach in which all health system services and budgets are integrated across professional, institutional and sector boundaries to provide a seamless continuum of care. This way, patients can more easily access the care they need throughout their lives – spanning disease prevention and health promotion, early detection and screening, diagnosis, treatment, rehabilitation and end-of-life care.

These models are increasingly enabled by advances in genomic tests and biomarkers that allow healthcare to be personalised, and by digital health systems that facilitate a free flow of real-time information between patients and all the healthcare professionals involved in their care.

This approach is expected to improve:

• efficiency and value – through the optimal use of the right resources at the right time and in the right place. Holistic payment models and health technology assessments (HTA) that break down existing budget siloes would better incentivise and reap benefit from innovations that deliver longer term value and across different components of the system. For example, earlier diagnosis and management of chronic diseases can realise ‘downstream’ savings by avoiding the complications that cause costly hospital-based care, long-term care and early death. This in turn supports the economic and environmental sustainability of health systems.
   
• equity – because people-centricity means all people. At present, gaps and variations persist between and within European countries in disease burden, access to healthcare innovation, and outcomes – as COVID-19 highlighted. Various marginalised groups are particularly underserved by health systems, including the homeless and migrants. People-centricity means that healthcare is tailored to people’s needs throughout life and that nobody is left behind, or outside of, health systems.
   
• resilience – through greater responsiveness, adaptability and flexibility, as well as play its full role in strengthening the EU’s strategic autonomy.

Peoples’ experiences of living with a condition and using health services and technologies, and their preferences and priorities, must inform how we organise and deliver healthcare.

Patients, caregivers and the public must be enabled to participate as fully informed and active partners in decision-making at all levels of the health system, including

• the care they receive as individuals 
• in the planning, design and evaluation of healthcare services and policies
• throughout the lifecycle of healthcare innovations, including research and development and HTA – for example via patient-reported outcomes (PROs)
• in the allocation of resources.

The EU could play an important role in creating a common framework and driving alignment in

• how to make health systems more people-centric across all these levels 
• how authorities should collaborate with patients and patient organisations
• standardised measurement of PROs and the use of these data for benchmarking within and between member states.

Knowledge is power, and citizen empowerment builds better health. The COVID-19 crisis reinforced the importance of reliable health information. Improving health literacy is vital to disease prevention, early disease detection, and better disease management, for example through self-care and adherence to medication. Therefore future health systems must also take full advantage of digital health tools and platforms that empower patients, carers and the public as partners in their own healthcare.

Empowering patients as partners

Industry: partnering for people-centricity

EFPIA and its members are committed to driving the transition to people-centred healthcare.

Enhancing patients’ lives

Industry is committed to developing treatments that meet the needs of patients and caregivers – enhancing their lives and their experience of healthcare. For example, we aim to develop treatments that:

• are simpler and easier to use, for example by reducing how often they need to be taken or moving from injectable to oral administration 
• are better tolerated
• improve outcomes that matter most to each individual.

Industry is also pioneering the use of digital health tools to complement its medicines in delivering these benefits.
Such innovation can enhance the value of care for healthcare providers, health systems and society, as well as for patients and carers.

• stronger collaboration to deliver transparent and well-informed decision-making processes
   
• investing in appropriate infrastructure
   
•  improvements in institutional structures, for example in regulation, HTA and reimbursement.

Patient support programmes

Beyond providing innovative treatments, many pharmaceutical companies provide services and support to help patients manage their disease and improve the effect of treatment, often called Patient Support Programmes.

Some of these activities are delivered through partnership with patient organisations, and several of them are recognised each year by the EFPIA Connecting Healthcare Awards. For example, recent award winners include:

An example of another initiative is Nobody Left Outside (NLO), supported by MSD. NLO is a collective of organisations representing people in some of the most marginalised communities in Europe, including homeless people, LGBTI people, people who use drugs, prisoners, sex workers and undocumented migrants. People in these groups are often at risk of poor health, but face many barriers in accessing healthcare. The NLO initiative helps organisations collaborate toward improving healthcare access for the communities they represent – on the basis that nobody should be left outside our healthcare systems.

Supporting carers

Caregivers are a cornerstone of the healthcare system, improving patient care while reducing pressure on parts of the health system – yet they are often overlooked. Estimates suggest that the economic value of unpaid care, as a percentage of the overall cost of formal long-term care provision in EU Member States, ranges from 50–90%.

EFPIA believes that governments, public institutions, the public and industry must collaborate to better support carers in the vital role they play, and in addressing their own needs.

We applaud the work of Eurocarers in supporting and empowering informal carers across Europe. Two EFPIA members, Merck and Pfizer Oncology, recently supported the development of the Essential care and cancer toolkit, by Eurocarers in collaboration with the European Cancer Patient Coalition, MacMillan Cancer Support and Nurses and the European Association for Palliative Care.

Another example is the international Embracing Carers™ Initiative, funded and co-ordinated by Merck. This initiative is dedicated to improving carers’ health and wellness, while increasing awareness and support for them within healthcare systems around the globe. It does this by collaborating with organisations to support carer initiatives, driving greater visibility and awareness of carer challenges, supporting increased policy attention and action, and creating innovative opportunities for healthcare system integration.

Most recently, Embracing Carers® created the Carer Well-Being Index to determine the current and residual impacts of COVID-19 on unpaid carers, including its impact on their economic, physical and psychological well-being.

Involving patients in research and development

To deliver people-centric treatments we need to engage with patients throughout the lifecycle of a medicine, from early research and development to understand patients’ needs, all the way to evaluating the real-world effects in clinical practice.

To this end, we collaborate widely with patient organisations and patient communities, as equal and valued partners. We believe in open and transparent dialogue between patients, industry and decision-makers throughout the lifecycle of medicines.

EFPIA has advanced the field of patient engagement through the EFPIA Patient Think Tank, having co-created clear principles around working together, and through various multistakeholder public-private partnerships, such as PARADIGM and GravitateHealth.

EFPIA co-led the PARADIGM initiative with the European Patients’ Forum (EPF). PARADIGM has produced a unique set of recommendations and tools to enable effective, meaningful, ethical, innovative, and sustainable patient engagement during medicines research and development. The many PARADIGM resources include a Patient Engagement Monitoring and Evaluation Framework to help partnerships between patients and patient organisations, bio-pharmaceutical companies, regulators and HTA bodies to self-evaluate the progress and impact of patient engagement in the medicines development lifecycle.

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a multi-stakeholder public-private partnership. It provides education and training to increase the capacity and capability of patients and patient representatives to understand and meaningfully contribute to medicines research and development, and to improve the availability of medical information for patients and other stakeholders. Many individual EFPIA member companies have contributed funding to EUPATI.

Gravitate Health is an ambitious partnership involving 39 members spanning academia, patient organizations, medicines regulators, healthcare providers and payers, digital innovators, EFPIA members and other stakeholders. It aims to equip and empower citizens with digital information tools that help them to be confident, active, and responsive in their patient journey, specifically encouraging safe use of medicines for better health outcomes and quality of life. Specifically, the Gravitate Lens (G-Lens) will focus on approved electronic product information content, offering a route for patients to access trustworthy, up-to-date information that better meet their individual needs.

In the EU Patient-Centric Clinical Trial Platforms (EU-PEARL) project, leading research hospitals, regulators, patient advocates and industry are working together to help shape the future of clinical trials. Specifically, this project aims to support a wider use of patient-centric ‘platform’ trials, which allow novel techniques and treatments developed by multiple companies and organizations to be tested efficiently to help address unmet needs. Patients and carers are integrally involved to ensure their perspectives are consistently incorporated in trial designs and outcome measures.

Case study