How to set up a scientific advisory committee

So you’ve registered your patient group as a charity, you’ve recruited your trustees/directors (more on that in a later post), you’ve brought together a first group of patients. What next?

You need a scientific advisory committee. As in any sector, credibility is of the utmost importance. Without credibility, nobody will listen to you. And in the medical sector, having world class scientific advisors means everything.

We were fortunate. One of the co-founders of the AKU Society is Dr L Ranganath, a Consultant in Metabolic Medicine at the Royal Liverpool University Hospital. He’s one of the most amazing, dedicated and sharp-minded clinicians I’ve ever met – an encyclopedia of relevant medical knowledge, with a strategic approach to AKU, and a genuine desire to help the patients.

So my first advice to you is: find your Dr Ranganath. You need to find a clinician like him who is 100% dedicated to your cause. That person will not be a careerist – they’re not doing this for selfish reasons – but someone who has a real scientific, medical and human interest in helping patients with your disease.

That person also needs to be an excellent networker. Again, we’ve been incredibly fortunate. Dr Ranganath has been the powerhouse behind the AKU movement at the Royal Liverpool University Hospital and the University of Liverpool. Indeed, it’s thanks to him that Prof Jim Gallagher, Derby Chair of Anatomy and Cell Biology at the University of Liverpool, came on board.

And this is my second piece of advice: find a world class, highly respected basic scientist who can drive forward the search for understanding the fundamentals of your disease. Prof Jim Gallagher is second to none in his area. With limited funding from the AKU Society, he’s managed to build a growing team of scientists who are making significant breakthroughs in our understanding of AKU. The publications are already starting to flow.

And here’s my third piece of advice: be careful who you ask to join your scientific committee. You’re looking for real team players, who will put forward their views convincingly, but will also be open to suggestions and debate. You don’t want stubborn, argumentative, careerist types.

And I would say that’s why we’ve been doing so well. Whether that’s in the UK or internationally, we only choose to work with respected and respectful team players, whether that’s in Slovakia, Italy, France, Spain, the USA, Jordan or anywhere else.

So here’s my fourth and final tip: once you have an excellent core team of clinicians and scientists, you need to grow your scientific community internationally. That’s what we’ve tried to do, as you can see here: http://grou.ps/findakure/380092. Indeed, it’s only with international scientific collaboration that we will manage to unlock the secrets of such rare diseases.

But more on that in a later post.