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 by 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.