How can we get the most from charity-industry collaborations?

Posted on April 4, 2013 by

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Effective collaboration between stakeholders is crucial for successful development of medicines that will benefit patients. But industry and charities must navigate a number of sometimes complex hurdles to reach their goal.

As part of our strategic plan, AMRC has been working to offer  more opportunities for charities to work with industry, and to share best practice,  aimed at building on our previous work facilitating collaboration. Our Optimising industry-charity links seminar on 31 January 2013 was a chance to bring together our member charities and representatives from industry, and find how we can move forward.

The attendees, mostly chief executives and senior research staff, were brimming with ideas and insights into what has worked for them, and what could be improved. We want to share some of the stories that came out of the day, and offer charities an opportunity to shape how we develop this area in the future.

What we found out

What was clear from the seminar is that there’s no one-size-fits-all approach for fostering collaborations. All our speakers and attendees had their own stories about what worked for them, showing that charities are flexible to choose how to develop  a collaboration that works for their own particular needs.

While there may be no ‘rule book’ for collaborations, there are things that both sides can do to help:

  • Take your lead from the patients. Both industry and charities emphasised that the best research stems from a clear understanding of what patients need. Dr David Gillen from Celgene said that industry wants to identify patients’ needs early on in the drug development process, and charities can play a facilitator role here.
  • Ask others! As the event demonstrated, many  charities and industry organisations are keen to develop  collaborations. Approaching  colleagues to ask for advice and ideas can be effective. For example, Dr Hitendra Parma from Archimedes Pharma pointed attendees to the Ethical Medicines Industry Group (EMIG) – a community of small to medium sized pharmaceutical companies who are keen to get involved with charities.
  • Identify a common goal. Dr Malcolm Skingle brought the perspective of GlaxoSmithKline, which collaborates with a number of patient groups. He said the challenge for charities is to identify where industry collaboration is the best way to help patients, building on good evidence that a project is tractable and addresses unmet medical needs. PIVOTAL, a Kidney Research UK initiative, is an example of doing this successfully. Elaine Davies told the group how the charity identified a lack of clinical evidence in support of clinical practice guidelines and, with industry partners, developed and peer-reviewed research to improve it.
  • Understand what matters. Knowing what is important to those in other sectors will be a huge help in identifying common goals. Dr Stephen Simpson from Arthritis Research UK mentioned that they will be including business development as part of their next round of peer review, and will be giving feedback to their grant applicants. Thus, if they want to seek funding from industry partners, they have the knowledge to highlight aspects of their research project that might be of interest to industry.
  • Keep talking. Once a collaboration has started it’s still important to invest time in nurturing a relationship, in just the same way as charities would with other sectors. Rachel Connor spoke about how JDRF have been working with their supporters to give them a voice in conversations with industry. She said that in collaborating with industry, the charity is ‘buying research, just like we would buy it from a university.’
  • It’s not just industry who are involved. Regulators, healthcare providers, researchers – all of these people also want to hear patients’ perspective. Dr Ian Hudson from the MHRA spoke about how the patient voice will be important in tackling restrictive and risk-averse regulation, while preserving the elements of regulation that protect patients involved in clinical research.
  • Use collaboration to improve your research. A number of speakers had found real scientific benefits to their research from adopting collaborative approaches. Dr Ralph Holme recounted Action on Hearing Loss’s experience with their ‘Translational Research Initiative in Hearing’ consortium aimed at speeding basic research on to delivery of new treatments. The charity is looking at supporting pilots to validate disease models and are working on trial recruitment and surveys.  Dr Jo Latimer from MRC spoke about their work with AstraZeneca, who have released a number of their products to MRC scientists, providing them with new opportunities to develop knowledge about disease.

How are AMRC taking this forward?

We are developing a structured programme of work that builds on the outputs from this meeting and dovetails with related and ongoing AMRC activities. This will be guided by expert input and advice from a new AMRC ‘Industry-Charity Advisory Group’, which will include AMRC member charity reps and representatives from industry.

If you’d like to be involved in this group, you can let us know in the comments, or contact Dr Liz Philpots, our head of research at l.philpots@amrc.org.uk.

Posted in: Research