ABPI Patient Engagement Strategy

Introduction

The UK faces an immense challenge in rebuilding a sustainable health and care system, able to deliver world class patient outcomes and attract global research investment. Central to success will be collaboration between the NHS, the life sciences industry, patients and the public.

2021 sees the launch of the revised ABPI Code of Practice, setting out core principles that acknowledge industry’s commitment to patients as central to its core purpose. This commitment touches every aspect of discovering, developing and bringing new medicines and vaccines to patients and involves:

• Designing clinical trials with patients rather than for patients
• Making it easier for people from diverse communities to take part in research
• Co-developing ways to help innovations find the best place in treatment pathways so they are available to everyone who can benefit from them
• Reflecting the outcomes that matter to patients

Our strategy sets out how the ABPI will deliver these commitments and make sure that patient engagement is consistently at the heart of our work.

We will:

• Create an ABPI Patient Advisory Council to reflect the patient voice in leadership decision making
• Involve patient organisations in all ABPI policies and campaigns
• Develop practical resources to make collaboration between industry and patient organisations easier
• Foster a patient centred organisational culture at the ABPI, while supporting our industry members to do the same

Establishing the ABPI Patient Advisory Council

The value of innovative medicines, vaccines and associated services is better shaped and informed by understanding what really matters to patients living with a condition, their families and their communities.

Learning from good practice of other stakeholder organisations such as the National Institute for Health and Care Excellence, the Royal College of Physicians and many charities, we are establishing an ABPI Patient Advisory Council, made up of six senior leaders from patient organisations.

Involving patient organisations in all our policies and campaigns

Industry and patient organisations have worked together for many years to advocate for policies that benefit patients. Commitment to shared goals has led to policy changes such as faster and fairer access to ground-breaking medicines and increased prioritisation for chronic disease areas in national strategies and plans.

The ABPI and our industry members also have a long tradition of co-developing successful campaigns with patient organisations and charities. These have delivered real benefits, such as raising understanding of the needs of patients with rare diseases and increasing patient involvement in clinical research.

Building on these strong foundations, we will from now on involve patient organisations in all our policies and campaigns as they are being developed.

We will do so in a way that is appropriate to the topic in question and works for the organisations involved, respecting their capacity and other priorities.

We believe that this will result in more thoughtful policy development by industry, more opportunities to collaborate, and even more effective joint campaigns that improve the lives of patients.

Developing new resources to make collaboration easier

Despite shared ambitions to work together for the benefit of patients, we know that setting up, managing and sustaining collaborative initiatives between industry and patient organisations can be challenging and resource-intensive.

Building on the emphasis on the patient as central to industry’s core purpose in the principles-based 2021 ABPI Code of Practice , we are taking steps to provide practical help and support to tackle challenges, streamline processes and make collaboration easier.

We are establishing an industry and patient organisation Task and Finish Group to review current challenges and good practice approaches to collaboration and develop a revised guidance toolkit by Quarter 4 2021.

We are also setting up a new ‘surgery’ process, where problems arising at any stage of the collaborative process can be discussed, solutions explored and learning shared.

Fostering a patient centred industry culture

Our ambition is to embed a patient centred culture right across our organisation, and to help our industry members to do the same. We believe that doing so will help industry deliver outcomes that matter to patients, enhance our long-term strategy, and contribute to securing the UK’s position as a global leader in life science.

We are making five changes to our core business processes to make this ambition a reality:

1. Involving our well-established Patient Organisation Forum in developing our annual business plan to shape activities and identify projects on which we can work together

2. Co-developing new training for staff and industry members on how to tailor communication so that
it resonates with patients and avoids jargon

3. Including patient representatives in designing and participating in our major external events and regular internal
staff briefings

4. Encouraging staff to share expertise and learn from patient organisations through their annual volunteering allowance and talent development plans

5. Incorporating patient organisation engagement into our induction programmes and onboarding of new UK industry leadership colleagues