Since the late 1980s, with the birth of the AIDS movement, advocates and patient organisations have been fighting for patients’ voices to be heard and acted upon in drug development and healthcare. Patients have unique insights, invaluable knowledge, and personal experience about living with a condition. They can raise awareness about the needs of their communities, and what really matters to them, their families, and their carers. Meaningful patient engagement is today recognised as a key success factor for effective and targeted healthcare delivery and drug development.[1]

Patient- and people-driven approaches do not apply only to the involvement of individual patients and patient representatives in their care and across the life cycle of drug development. They are also closely linked to the development and sustainability of patient organisations and the patient movement itself.

A group of patient leaders, educators and industry leads in the EFPIA Patient Think Tank discussed the required skillset and capabilities for effective patient advocacy and collaboration with other stakeholders.

The group characterised an effective patient advocate as follows[2]:

• Persuasive in his/her communication, assertive as an expert in a specific disease area, and able to build coalitions with different stakeholders;
• Equipped with knowledge about his/her disease area and about medicines research & development, the regulatory environment, and the health technology assessment process;
• Aware of the patient movement, of the key players in it, of the trends and of what may be coming next;
• Familiar with industry’s compliance and legal rules of engagement, and able to advocate towards industry partners with compliant proposals.

These characteristics can be translated into the following capacity building needs: disease-specific knowledge, advocacy skills and community awareness, medicines R&D expertise and soft skills (communication and leadership skills etc.).

Yet, patient leaders and organisations face several challenges when it comes to capacity building efforts. Firstly, they need extensive knowledge and skills to become strong advocates. In the case of people with lived experience, their life situation might not allow them to attend formal training programmes. In the case of people with lived experience, their life situation might not allow them to attend formal training programmes because of either juggling busy schedules (as advocates, carers, active professionals), navigating the complexities of their conditions or having to cover out-of-pocket costs for the training. As for disease-specific knowledge and advocacy training, patient organisations are best placed to provide this but are often struggling with funding and resources. Finally, in relation to medicines R&D, multi-stakeholder programmes like EUPATI exist but are demanding in terms of time investment and are therefore not suitable for all patients.

On the topic of funding and resources, patient organisations are navigating a complex environment. The crises of the past three years – the COVID-19 pandemic, followed by the war in Ukraine and the unfolding refugee, economic, and energy pressures – pose an existential challenge. These pressures put significant strain not only on their daily operations but also on their sustainability and on their ability to retain, train and grow staff and patient leaders.

Recommendations

Stronger multi-stakeholder collaboration between patient organisations, industry, academia and initiatives like EUPATI, WECAN Academy, the EFCCA Academy, the EURORDIS Summer School or the Master in International Patient Advocacy Management would forge a clearer path for patients to understand where they can find various types of training.

Joining forces around training would benefit all stakeholders and allow for efficient resource allocation. Both patient leaders and industry PE leads need to build soft skills in communications, leadership, listening, engaging with different perspectives, and building relationships and coalitions across the healthcare sector. Similarly, they both require a good understanding of industry compliance and legal rules and of their real-world application.

Organising joint trainings on relevant topics and having role play simulations would help to both gain and improve knowledge, and to understand each other better.

While patient organisations and industry have been working on meaningful, transparent, and ethical collaborations, they do not operate in a vacuum. Other stakeholders, including academia, regulatory bodies, and payers, need to participate in capacity building efforts for patients’ voices to be heard loudly and clearly, and for their most pressing needs to be addressed. 

Over the coming months, the EFPIA Patient Think Tank will act as a forum for discussion and co-creation between industry, patient organisations, patient experts, and researchers to advance this topic.

Authors (in alphabetical order):

Magdalena Daccord, Executive Director, FH Europe
Maria Dutarte, Executive Director, European Patients Academy (EUPATI)
Elsie Evans, Ambassador Programme Manager, FH Europe
Isabella Haaf, Head of Communications, European Federation of Crohn’s & Ulcerative Colitis Association (EFCCA)
Wafae Iraqi, EMEA Patient Engagement Manager, Janssen: Pharmaceutical companies of Johnson & Johnson
Mihaela Militaru, Senior Director, EU Patient Insights & Advocacy, Oncology, Merck
Dr. Paul Robinson, Patient Engagement Lead, Europe, MSD
Oana Scarlatescu, Associate Director, Strategic Partnerships and Healthcare Systems, EFPIA
Thomas Smith, EUPATI Fellow & Independent Patient Engagement Consultant
Martina Vaccariello, Public Affairs Manager – Oncology & Neuroscience Europe, Abbvie

This post is the work of a writing group representing patient experts, patient organisations (POs) and industry patient engagement (PE) leads, formed within the EFPIA Patient Think Tank (PTT). Together, the authors summarise the highlights and recommendations of a recent PTT workshop on capacity building in the context of patient engagement.

[1] EFPIA Patient Think Tank, Connecting Healthcare Guide 2021, available here: https://www.efpia.eu/media/602853/connecting-healthcare-awards-2021.pdf.

[2] Some of these, especially soft and technical competencies and skills, were similar to the findings of a parallel exercise focusing on industry patient engagement leads.