Industry is leading the drive for research transparency – but we can still do more

The ABPI’s Research, Medical and Innovation team is holding its first member conference this week on increasing trust in pharmaceutical industry research. Dr Sheuli Porkess outlines one of the ABPI’s priorities – the drive for research to be open, accessible and understandable.

I’m looking forward to many productive discussions with our members this week about the research-related issues facing our industry.

The pharmaceutical industry is the biggest funder of research in the UK – in 2018 industry invested £4.5billion researching and developing the medicines of the future. We want to increase trust in that research, and we’ll be exploring different ways we can do that.

At our conference I’ll be leading a session with our members on clinical trial transparency.

Industry is already making great progress, with more than 90% of industry-sponsored clinical trials registered and reported.

This improvement has also been acknowledged by the Science and Technology Select Committee. In its report, published in October 2018, the committee highlighted lower rates of reporting research results in some non-commercial research.

But the push for transparency isn’t complete in any sector. For genuine transparency, we need to go beyond simply publishing research.

Our mantra is ‘available, accessible, understandable.’

We are doing well on the availability bit, but genuine openness means research also needs to be open access – which means it shouldn’t be behind a paywall or other barrier.

It also has to be understandable – and not just by scientists who’ve spent their whole lives researching a particular field. We want to see lay summaries published to in easy to understand language so anyone could have a look at results of research and understand what they are looking at.

In the case of clinical trials, feedback to trial participants can be improved and made more consistent. We’re considering ways we could do this, all of which will need guidance to be developed:

• Informing trial participants of any published articles which come from a clinical trial. This may also be helpful for decision makers on future clinical research, such as granting bodies, research ethics committees and regulators.
• Participants could be invited to feedback roundtables to discuss their experiences which can inform interpretation of trial findings, ongoing work post-trial, design of follow-up investigations and future PPI initiatives
• Use of multimedia to accompany lay summaries, clinical trial reports and publications to assist in communicating findings and context of the research

The HRA’s transparency strategy is expected to be published soon. Having commented on the strategy consultation, ABPI is already working with HRA on how industry can support implementation. This complements the work we are doing with the European Forum for Good Clinical Practice (EFGCP) and EFPIA initiative on good lay summaries.

It is crucial that we all operate to best practice guidelines for transparency and disclosure. We are happy to work with the HRA, NIHR, academia, charities and others to develop these guidelines and ensure all aspects of the sector are aligned on what is considered “gold standard” practice.

We all want to build trust in industry research – and I believe that making our research available, accessible and understood by a wider audience is a major way we can do this.