EGANs collaboration with Roche
A Success Story
Since 2004, a unique model of cooperation between the patient group EGAN and Roche, one of the world’s leading healthcare companies, is a prime example demonstrating how patient advocacy groups and industry can efficiently cooperate, with mutual respect and benefits for all involved parties.“Patient groups are in the pockets of the industry. There is no basis for equal communication when one partner is paying all the bills. It’s just business.” Everyone familiar with the healthcare sector and the work of patient advocacy groups has heard a variation of these opinions. They reveal a scepticism that is fairly common amongst some when patient groups and industry collaborate.However, these prejudices focus on the exception, rather than citing a rule. Not only are a large majority of patient groups funded from a mixture of public, private and industry sources; such partnerships bring new, independent information and insight to all involved parties and simultaneously raise public awareness. Moreover, most patient groups become more and more organised in professional organisations with a unique mixture of experience-based and professional expertise.
Several examples serve to demonstrate that industry can operate as an equal partner rather than as the ill-perceived intimidating, but necessary sponsor. Amongst those, the collaboration between EGAN and Roche is a particularly good example; it is a collaboration that has been established for a number of years. Unlike some, this collaboration is not focused on one single project with members seceding once the issue concludes. Instead, this group has been meeting regularly for many years, allowing mutual trust and respect to develop naturally. This partnership provides a solid foundation for open discussion and a rewarding collaboration; where dialogue is not limited to sharing common views and divergent opinions can be exchanged and further explored.
Too abstract? Specific examples of how both parties have benefited from combining their respective expertise may illustrate this point. Together, EGAN and Roche established the need for a series of layperson booklets on topics such as clinical trials, bio-banks and personalised healthcare. Firstly, EGAN identified the questions which were frequently asked by patients; in turn, specialists from Roche were charged with supplying answers to these questions. EGAN finally ensured that everything was understandable without a medical background.The final result is a series of booklets which tackle issues that are of actual relevance for the patient community rather than addressing preconceived issues that medical specialists believe patients could be concerned about. Not only do these booklets represent a valuable tool for EGAN and other patient organizations to educate their members; they also serve to help Roche in better understanding potential concerns a person may have prior to participating in a clinical trial or donating a sample to a bio-bank. For this reason, they are now helping investigators in Roche-sponsored clinical studies to better inform patients who consider enrolling.
EGAN and Roche have also joined forces to improve the informed consent forms that every participant in a clinical trial has to sign. This is necessary to certify they have been adequately informed about the purpose, scope, risks, benefits and other relevant aspects of a proposed study. The original informed consent forms were hard to understand without a medical background, so they are currently being re-written by EGAN and Roche in a joint effort, with the goal of translating technical language into something that patients can easily understand. Ultimately, this will not only make it easier for potential participants to make a well-informed decision; it will also help investigators educate potential participants in a study.The important point, implied by both projects, is that sheer knowledge is not enough if it does not respond to a specific need. Whereas pharmaceutical companies could write books about the scientific background of a clinical trial, as well as their medicines and the disease that is targeted, they lack the critical insight into the actual lives of patients affected by the disease, in order to address the specific issues that matter most to them.
Aided by doctors in the understanding of scientific aspects, patients tend know their disease better than anyone else; they are affected by it, have had to face the questions, and often fears, it brings, and they are the ones who know what they really need. Understanding their perspective is invaluably important for a company. For instance, medical professionals both at Roche and a number of other companies originally believed that Alzheimer’s disease (AD) patients were most affected by their memory loss. However, this common misperception was swiftly remedied after direct input from AD patients, and their relatives, which revealed that the inability to perform everyday tasks was considered the most severe consequence of their disease. Essential input and knowledge such as this gives research teams a new direction that implies the opportunity to address areas with greater direct benefit for patients.
Insights into the concerns and challenges someone is facing are rarely offered on a silver platter. If there is no established trust, there is little chance of an equal, open exchange of ideas; and if there is no open exchange, potential new opportunities of collaboration and achievement will be missed.What better way to ensure such opportunities remain a reality is there than by committing yourself to a long-term cooperation where mutual respect and understanding help you achieve this?
Note: Although the partnership subscribes to documents like the EFPIA Code, it is additionally based on a signed Principles of Co-operation that stress mutual respect, trust and commitment, equal value, maintenance of independence, transparency and confidentiality. The partnership formula includes a yearly two-day meeting which focuses on common issues in the biomedical and pharmaceutical research and policy field, to which a broad spectrum of European patient representatives is invited. In between these meetings, an EGAN/Roche working group elaborates on the priorities and actions that were commonly identified during the preceding meeting.
Information on biomedical research and healthcare: Your Questions Answered
- Are you interested in joining a clinical trial to help develop new medicines?
- Have you been invited to volunteer to provide blood and tissue samples and personal health
- information for a bio-bank.
- Do you know what “Personalised Health Care” is, and how it could affect your care and the treatments you might be prescribed?
- Are you unsure about the implications for you and your family?
- Or do you simply want to know more about one of these issues?
If the answer to any of these questions is “yes”, or you just want to know more about these topics then a new series of leaflets might be just the thing for you. Jointly produced by EGAN and Roche, the resulting published leaflets on clinical trials, biobanking and personalised healthcare provide straightforward non-technical answers to questions that patients and families often ask. Based on practical experience of answering patients questions, they provide authoritative, unbiased information that will help patients and families make informed choices.
Versions in English and German are downloadable free of charge from the following websites:
They may be freely reproduced and distributed.
Contact details for further information on the joint Working Party EGAN / Roche:
Alastair Kent (EGAN): firstname.lastname@example.org