Why is patient involvement important to ABPI

The UK faces an immense challenge in delivering a sustainable health and care system, which is able to provide good patient outcomes and continue to attract global research investment.

How does the ABPI deliver on these priorities?

Our commitment: 1. We ensure the patient voice is embedded in leadership decision making

What we do

We will continue to achieve this by recruiting and maintaining the ABPI Patient Advisory Council - made up of eight chief executives from across UK patient organisations, providing the ABPI Board Members, Board Committees and the ABPI Senior Leadership Team with patient insight to help inform strategy, policy priorities and work-plans across the ABPI.

The Patient Advisory Council draws upon the individual expertise within its representation and their wider patient communities to support and share diverse thinking from the breadth of communities.

What we aim to achieve

By working with the ABPI Patient Advisory Council, the ABPI Senior Leadership Team and the ABPI Board Members we gain a better understanding of what matters to patient communities and co-develop insight and recommendations that support equitable access to research and innovation for UK patients.

Examples of the work co-developed with the ABPI Patient Advisory Council: 

Our commitment: 2. We involve patient organisations in all ABPI policies and campaigns

What we do

The pharmaceutical industry and patient organisations have worked together for many years to advocate for policies that benefit patients. Commitments to shared goals have led to policy changes such as:

• faster and fairer access to ground-breaking medicines
• increased prioritisation for chronic disease areas in national strategies and plans
• Raising understanding of the needs of patients with rare diseases and increasing patient involvement in clinical research.

Building on these strong foundations, we will continue to involve patient organisations in 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 will also continue to integrate our patient involvement commitment into the ABPI strategy to ensure it is considered and integral in all our strategic priorities.

What we aim to achieve

By continuing to involve patient organisations in our work, we believe this will result in more thoughtful policy development by the pharmaceutical industry, more opportunities to collaborate, and even more effective joint campaigns that improve the lives of patients.

If you are a charity and want to get involved in this work please join the ABPI Patient Organisation Forum.

Our commitment: 3. We share practical approaches and resources to make partnerships between industry and patient organisations easier

What we do

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

We will continue to provide practical help through working with the Prescription Medicines Code of Practice Authority (PMCPA) running annual workshops for the ABPI Members and patient charities to better understand the ABPI Code of Practice, troubleshoot challenges and share case studies of working together.

We will continue to run ‘Partnership Surgeries’  at the ABPI Patient Organisation Forum - where problems arising at any stage of the partnership process can be discussed, solutions explored and learning shared.

We will continue to invite feedback and co-create and refresh materials to support understanding of the ABPI Code of Practice and partnership working.

What we aim to achieve

Through working together and building knowledge and confidence in the ABPI Code of Practice and in partnership working grow our knowledge of how to partner and build a larger network for ABPI Members with Patient Charities. Growing the opportunity for better partnerships.

Examples of the work co-developed  to support partnership working together:

Our commitment: 4. We foster a patient centred organisational culture at the ABPI, while supporting our industry members to do the same

What we do

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

We are committed to business processes that make this ambition a reality:

1. By consulting and involving our well-established Patient Organisation Forum in our annual business plan - shaping activities throughout the year, co-developing work programmes and sharing insight on what matters to patient communities.
2. By partnering with the Patient Information Forum to co-develop annual training for ABPI staff and industry members on how to tailor communication so that it resonates with patients and avoids jargon, and we will continue to undertake the PIF TICK audit annually to ensure our processes support us to achieve this.
3. By including patient representatives in designing and participating in our major external events and staff briefings
4. By encouraging ABPI staff to share expertise and learn from patient organisations through their annual volunteering allowance and talent development plans
5. By including patient involvement in our induction programmes and onboarding of new UK industry leadership colleagues

What we aim to achieve

By embedding a patient centred culture as an organisation all staff will be better equipped and informed on what matters to patients and how and when to get them involved in the work we undertake. 

If you are a charity and want to get involved in this work please come and join the ABPI Patient Organisation Forum.

Engaging and Involving patient communities

We are committed to working with patient communities and there are many examples across our teams and  ABPI members of the work done together to co-create campaigns and policies.

There are two core patient communities where health charities and ABPI members connect and have the opportunity to explore areas of shared interest: