We live in exciting times: innovation is booming; the pharmaceutical industry’s pipelines are full of promise; and unmet medical needs are being addressed. To carry on further down this path towards better healthcare provision overall, the pharmaceutical industry is rightly pursuing the use of big data to better target medicines.
However, what must not be forgotten in this magical and meaningful formula is the essential role of patients – after all, it is them for whom medicines are being developed. The patient voice must be heard as an essential and vastly beneficial ingredient in the development process.
So if patients are to play this pivotal role, they must also be engaged in shaping the dialogue – and even the relationship – between the two sides. To achieve this, we have to take on board some key action points.
Patient representatives must be encouraged to reach out to their constituencies and connect with their members so that, based on this valuable feedback, they can embark upon prioritizing issues of major concern.
The next step is to take this show on the road: allow patient representatives to present a range of projects at corporate partners’ events. Bringing corporate partners together to discuss projects identified by patients will help to throw a spotlight on areas of mutual interest and benefit. This will highlight areas of potential co-operation that can only serve to improve the development and administration of new medicines.
It will be essential to address topics that arise from the “lived experience” of medications on patients. This could be realised in part through developing and formulating algorithms that reflect the “real world” situation of patients as subjects of the treatment process. If this is really going to work, though, we’ll need these algorithms to enjoy the support and acceptance of regulatory authorities.
These are some of the practicalities we face en route to properly shaping the patient-industry relationship. There is, though, an overarching element to all of this that we must under no circumstances forget: transparency. If we are really going to make this work for the benefit of all parties involved, we must at all times adhere to a sponsorship policy and respect each other’s boundaries.
About the author
Audrey Craven is the immediate Past President of the European Federation of Neurological Associations (EFNA). She is a founding member and current President of the European Headache Alliance (EHA) and a former Council Member of the World Headache Alliance (WHA).
Audrey is also founder and President of the Migraine Association of Ireland (MAI) and a former Chairperson of the Neurological Alliance of Ireland (NAI). She was a member of the Irish neurological Expert Advisory Board and in 2013, was the only patient representative on the Scientific Steering Committee for the European Commission’s – European Month of the Brain.
Audrey sat as the Independent Patient-Chair of the European Headache and Migraine Trust International Congress (EHMTIC). In 2008, she officially opened the European Headache and Migraine Trust International Congress and in doing so, became the first ‘patient’ to have such an honour.
Audrey received a “Fabulous Founders” award for volunteering during 2001, the UN International Year of the Volunteer and she continues to work on a voluntary basis. Audrey was also the 2004 recipient of the international Elizabeth Garrett Anderson Award, given to the woman who has done most to alleviate the burden of headache worldwide.0