This was the first Association of British Pharmaceutical Industry (ABPI) Patient Organisation Forum of 2022. The ABPI Patient Organisation Forum is jointly chaired by members of the ABPI and patient groups and charities. Its aims are to identify areas of mutual interest, to promote understanding and, where appropriate, to develop collaborative working opportunities on policy and practice between industry and organisations that represent patients.

ABPI –What are the challenges we face in 2022? How can patient groups get involved?

In this presentation, Colette Goldrick shared the priorities and progress the ABPI have made over recent months in line with the APBI’s plan, which was shared with the forum last year. The six main areas of interest are:

  • Ensure value, access and uptake of innovative medicines and vaccines now and in the future
  • Improve the attractiveness of the UK for industry research, development and manufacturing
  • Build better partnerships with the NHS across the life sciences sector
  • Build a stronger industry reputation in the UK
  • Improve the UK’s health data capability and access
  • Provide international leadership and drive global policy.

As work progresses, the ABPI will continue to invite patient groups and charities to actively participate in areas such as the Accelerated Access Collaboration (ACC) to address health inequalities, NICE methods and processes, the Voluntary Pricing and Access Scheme (VPAS) and the Medicines and Health Care Regulatory Authority (MHRA).

There is also an opportunity for patients to get involved with the ABPI data plan to improve public trust in how scientific and medical data are used. Patients and the public will be asked to get involved in a campaign for sharing health data using case studies, human stories and video interviews. The results of the campaign will be shared with the NHS and government via exhibitions and awareness days to improve government’s commitment to a tangible data plan.

How can charities grow their work with the pharmaceutical industry?

The Charities Research Involvement Group is conducting a survey to improve patient and public involvement in working with the pharmaceutical industry. The survey will also show how the pharmaceutical industry want to work with patient groups and charities. The survey has been completed by almost 50 companies, and the group plan a workshop to discuss the findings from the survey later in the year. The final report and recommendations will be shared with Forum members later this year.

NICE Update –What are the recent changes to processes at NICE?

NICE have recently published their new methods and processes manual (January 2022). Action Kidney Cancer have been working on this public consultation over the past 2 years. This was a huge amount of work, compounded by COVID. Strong evidence was needed to support changes in methods and processes, and the technical working groups (which included patient groups and charities) were extremely technical! The past 2 years have been a challenging environment to work in with a lot of external pressures.

Positive outcomes of the methods and process review include a better way of handling the uncertainty of the effectiveness and safety of a treatment, more focus on clinical parameters, severity modifiers to replace the end of life criterion, focus on real world data, inclusion of carer quality of life, inclusion of what is important to patients, and a flexible modular approach to updating the manual.

Negative outcomes include the severity modifier, which could lead to less people at the end of their lives receiving treatment, the discount rate applied by the pharmaceutical industry is not taken forward, complications for rare diseases and highly specialised technologies.

Tackling the challenges for research and development in the UK

This presentation explored ways that patient groups and charities can get involved in policy development with the ABPI. The ABPI described the research process and invited patient groups and charities to get involved. There is also work ongoing to tackle greater diversity and inclusion in clinical trials and to bring back the level of clinical research to pre-pandemic levels in the UK.

If you would like to get involved with any of this work and represent the patient voice within the pharmaceutical industry, please email us.