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ABPI Website
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Partnerships
- Patient involvement
Patient involvement
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.
The key to solving this challenge is collaboration between the NHS, the life sciences industry, patients and the public.
The ABPI Code of Practice sets out the core principles pharmaceutical companies must follow in the UK, including being clear in their commitment to putting patients at the centre of everything they do. This commitment touches every aspect of discovering, developing and bringing new medicines and vaccines to patients. It involves:
- designing clinical trials with patients rather than for patients
- making it easier for people from diverse communities to take part in research
- working with patients to co-develop ways to help innovations find the best place in treatment pathways so they are available to everyone who might benefit
- reflecting the outcomes that matter to patients
By working with patient charities and patients we can achieve these ambitions and ensure better outcomes and experience for patients.
The ABPI want to lead the way in ensuring patient engagement is integral to our work. To support this ambition, we work with patient organisations and ABPI members to identify the priorities we should focus on. Working together we:
- ensure patient voices are an integral part of leadership decision making
- involve patient organisations in all ABPI policies and campaigns
- share practical approaches and resources to make partnerships between industry and patient organisations easier
- foster a patient centred organisational culture at the ABPI, while supporting our industry members to do the same
The ABPI is a member of PIF and has been awarded the PIF TICK the independently-assessed quality mark for print and digital health information. It helps people identify trusted, evidence-based information.
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:
1. How to make sure patients get more equitable access to innovative medicines
As a collective of charity CEOs working collaboratively with the ABPI, we have long been aware of the human cost of NHS decisions and processes that fail to ensure equitable access and timely uptake of proven innovative treatments. This is a problem that compounds already deep-seated health inequalities across the UK.
This human cost can be significant, and our report illustrates the impact that the inequitable uptake of innovative treatments can have on patients, their families and the health professionals who care for them.
More positively, our report also sets out practical examples of how to minimise this inequity and improve patient outcomes and care.
2. Collaborate to Innovate
In recent years the UK has fallen behind in research, which means the NHS, healthcare professionals and the UK population risk reduced access to new treatments, diagnostics and state-of-the-art care. Although signs of recovery are starting to emerge, combining the resources and expertise of NHS, charity and life science industry partners is essential for changing this trajectory.
This report, based on a roundtable discussion between the NHS Confederation, the Association of the British Pharmaceutical Industry (ABPI) and health charity leaders, explores practical ways to boost UK research and engender a culture of innovation.
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:
3. The ABPI Sourcebook
The ABPI has produced this sourcebook to support pharmaceutical companies, patients and patient organisations work together successfully, with relationships that are in the interests of patients and meet the standards set out in the ABPI Code of Practice.
4. Best practice guidance: Supporting patient organisations to report industry funding
Transparency is essential when pharmaceutical companies work with patient organisations. The ABPI Code of Practice for the Pharmaceutical Industry places requirements on industry to publish annual lists of payments to patient organisations, and we endorse this approach.
Currently, there is no similar requirement for those patient organisations in receipt of grants or funds from the pharmaceutical industry, however the ABPI Patient Organisation Forum requested some good practice guidance to support small charities in considering how they disclosure funding – this guidance was developed in response.
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:
- 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.
- 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.
- By including patient representatives in designing and participating in our major external events and staff briefings
- By encouraging ABPI staff to share expertise and learn from patient organisations through their annual volunteering allowance and talent development plans
- 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:
ABPI Patient Organisation Forum
The ABPI hosts a Patient Organisation Forum for registered patient/health charities to come together with each other and pharmaceutical companies to network and learn. The Forum has a shared goal of supporting equitable access to research and innovation for UK patients.
ABPI Patient Advisory Council
Council members provide the Association’s Board and its senior team with meaningful insights into the patient experience, to inform strategy, policy priorities and work.
Patient Information Forum
As well as the ABPI working directly with Health Charites we are committed to membership of the Patient Information Forum.
PIF TICK - ABPI is a trusted information creator
The Patient Information Forum Certification, PIF TICK, is the only independently-assessed quality mark for print and digital health information. It helps people identify trusted, evidence-based information.