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.

My name is Amit Aggarwal. I'm the Executive Director for Medical Affairs and Strategic Partnerships at the ABPI. Every patient has a unique story, a unique experience, and their experience is absolutely essential in helping shape the healthcare that we receive.

 

The purpose of the pharmaceutical industry is to develop medicines and vaccines for the benefit of patients. It's absolutely essential that we have patient involvement in that process right from the beginning when deciding what medicines, what compounds to take through the medicine's discovery and research and development process all the way through to bringing those medicines ultimately to doctors and other health care professionals who will prescribe those for patients.

 

Involving patients in the development process for new medicines and new policies isn't just good practice. It's absolutely essential. Patients bring invaluable insights in terms of their needs, their challenges and experiences. And all of this really helps guide the creation of treatment that will help improve lives. I think true collaboration between the industry and patients and patient organisations starts with three elements really. Trust, transparency, and co-creation.

 

So, we're absolutely committed to making sure that patient involvement is truly at the heart of everything we do.

The importance of working with patients

Dr Amit Aggarwal, ABPI Executive Director Medical Affairs & Strategic Partnerships discusses how the pharmaceutical industry works with patients and the valuable insights they bring.

The work of the Patient Council and Patient Organisation Forum

Brian Duggan, ABPI Strategic Partnership Policy Director discusses how the pharmaceutical industry works with patient groups. 

I'm Brian Duggan, Director of Strategic Partnerships here at the ABPI. One of the great things about the job I get to do is to bring together leaders across our companies and patient organisations and groups together. 

 

It's a proper relationship where you bring together patient leaders and company leaders to work through some of the most complicated challenges in health to bring the most innovative medicines to patients. There's two ways in which we do that. The Patient Council. It's a group of eight chief executives representing their patient groups and their patient organisations across different disease and therapeutic areas to advise the ABPI board and our companies and ensure that the patient voice is at the heart of everything we do. 

 

And the other is an organisation called the Patient Organisation Forum and that's a properly collaborative group of people. It's a place where every voice counts and where any individual challenging disease area can be represented in the ABPI and we can hear from and learn from the experiences of those patient organisations facing really difficult circumstances and trying to get new treatments for their area. 

 

It's really important to the ABPI that patient voices are central to all of our work. So if you're out there working in a patient organisation, a patient group, a patient charity, and you want to work with some of the leading companies developing new products and new technologies and new medicines that will support care in your area, then please get involved in the patient organization forum because that's the place where companies and patient organisations work together to transform outcomes across the NHS.

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

How does the ABPI deliver on these priorities

We ensure the patient voice is embedded in leadership decision making

We ensure the patient voice is embedded in leadership decision making

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We involve patient organisations in all ABPI policies and campaigns

We involve patient organisations in all ABPI policies and campaigns

Four office workers stand talking in front of a set of glass meeting rooms
We share practical approaches and resources to make partnerships between industry and patient organisations easier

We share practical approaches and resources to make partnerships between industry and patient organisations easier

Team of office workers sat around a large conference table having a meeting
We foster a patient centred organisational culture at the ABPI, while supporting our industry members to do the same

We foster a patient centred organisational culture at the ABPI, while supporting our industry members to do the same

A mixed group of young people smiling and working in an office setting

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.

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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.

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Charity-Industry Partnership Case Study Library

The ABPI's charity-industry partnership case study library has been developed to support building greater awareness and understanding of partnerships. 

The library hosts a collection of member case studies that showcase examples of the impact working together can achieve. This library will be expanded further with additional case studies as part of the ABPI's ongoing commitment to patient and public Involvement.

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.

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