Much has been written in the industry and lay media alike that collaboration between pharmaceutical companies and patient groups enables conjoint benefits or conversely, is deemed simply improper. Specifically, close links between pharma and patient groups have, in the past, drawn criticism from all corners, particularly the media and some healthcare professionals. To the uninformed, it is understandable how pharma ties with patient groups must appear and it is hard to convince them that pharma partnerships with patient groups can be altruistic. So in these times of austerity, scepticism and regulatory obstacles how can patient groups truly benefit from these partnerships without damaging their independence and credibility?
The mission of most patient advocacy groups is to represent, advance and advocate the collective interests of those who suffer from a particular disease. Achieving this under extreme economic pressure is a massive challenge, so patient groups are increasingly calling on external expertise to enable them to overcome these obstacles. Working with pharma companies who can supplement skills and resources can provide benefits that are not otherwise achievable or will take a lifetime to develop.
AXON has a long tradition in working with patient groups and one of the most successful, and certainly memorable initiatives we were part of involved Roche and The European Liver Patients Association (ELPA), as part of a wider hepatitis C awareness campaign. Dennis, an unassuming animated stickman was brought to life to tell us exactly how we can become infected with hepatitis C via a series of unfortunate, yet arguable common activities.
However, pharma companies can add value beyond support programmes or disease awareness campaigns. They can contribute skills and expertise arising from extensive knowledge of the therapy areas relevant to a specific patient group or patient population. For example, this year in the UK, the Department of Health and the Association of the British Pharmaceutical Industry launched ‘Joint Working’; a tool that enables National Health Service (NHS) organizations and the pharmaceutical industry to work together in the interests of patients. Joint Working provides guidance on how the NHS and pharma can pool skills, experience and/or resources for the joint development and implementation of patient-centred projects.
I think the above example demonstrates how far collaboration in the health sector between pharma, healthcare providers and patient groups has moved beyond one of positioning pharma as simply a funding stream or revenue source. In fact it is becoming increasingly common for not-for-profit organisations to provide research grants to pharma or bio-techs for research and development purposes, something more commonly seen in the orphan or rare disease space. For a great example read up on The Cystic Fibrosis (CF) Foundation and Vertex Pharmaceuticals, and how that collaboration brought about a major drug discovery treating the underlying cause of CF.
I am a supporter of any collaboration that puts patients first and benefits them and those affected by their condition or disease. In simple terms, conjoint working needs to reduce duplication of effort (particularly in regards to disease awareness) and increase efficiency that results in the provision of reliable, accurate and timely information, care or treatment, that helps people suffering from a disease or condition. Surely that’s a good thing.