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*Patients want to be more than market research fodder; we want to be part of the drug discovery process*

Patients want to be more than market research fodder; we want to be part of the drug discovery process

Im a patient with a rare diseaseadrenomyeloneuropathy, or AMN. But I have had a long career as a management consultant and business strategist, and before that as a software designer. Im used to challenging others about their plans and strategies; now its time to put myself under scrutiny. Lets start by stating the obvious. Patients, especially those with rare diseases, are looking for solutions that will make their lives more manageable, alleviate symptoms or, best of all, bring cures. Pharma and patients are key players in orchestrating solutions. But the list also includes the doctors and clinicians who provide care, the scientists doing basic research, and government and funding agencies. Each of these groups has its own main stakeholders: Pharma has shareholders; scientists have funders; doctors and clinicians have government; and government has, well, us, the taxpayers. Its a complex picture, but I use it to illustrate a point. Patients hoping to influence pharma wont get far unless they start to understand this bigger picture. Simply beating up on pharma wont take us far. And we need to understand more than the fact that there are multiple players. We need to understand what drives these groups and how we can influence them.

Influencing pharma

Pharma is making big new strides in engaging with patients through social media. But I suspect that the main use of all this engagement from pharmas perspective is currently not much more than what used to be known as market research. I and other patients want to be much more than market research fodder. We want to be part of the drug discovery process, because we want to influence what gets discovered. But unless we can identify and provide a quid pro quo for pharma, we wont get far. And that quid pro quo must be adding value to pharma. If we add value, then pharma is more likely to invest in drug development that can help us. Pharmas will always have a business focus and they will pay much more attention if we really can make a difference. I dont have immediate answers but, with the comments I hope to receive from this blog, perhaps we can explore some useful questions and muddle through to some tentative suggestions. Because I have a rare disease, Ill be focusing a lot on the needs of this group. The anomaly, expressed last year by Sir Liam Donaldson as he relinquished his post at the NHS, is that rare diseases are not rare. Taken together, rare diseases are the largest group of diseases in the UK, bigger than cancer and heart disease. And since we started to understand that these big killers can each be thought of as many different, smaller disease groups, maybe we all have more in common with rare diseases than we think. So thats it. The areas Ill try to explore in the months ahead are how patients can engage with pharma, how they can add value through that engagement, and how rare diseases can add special insight to pharma.