Roche and EGAN celebrate 10 years of helping patients to be heard

Signing of the Principles: From left to right: Silvia Matile-Steiner (Roche), Klaus Lindpaintner (Roche), Cor Oosterwijk (EGAN), Alastair Kent (EGAN), Ysbrand Poortman (EGAN)

This year’s EGAN–Roche Strategy Workshop, which took place in January 2014, included a celebration to mark ten years of cooperation between the Patients Network for Medical Research and Health (EGAN) and Roche.

EGAN is a coalition of European patient organisations that works to give patients a voice in research and health-related policy, particularly regarding genetic diseases. The group’s main objective is to promote patient-centred innovation.

Since 2004 Roche and EGAN have developed a cooperation that is a prime example of how patient advocacy groups and industry can work together efficiently, strategically, and create benefits for all involved. Regular meetings between presentatives of Roche and EGAN have allowed mutual trust and respect to grow naturally, providing a solid foundation for open discussion and productive collaboration.

Among the partnership’s tangible outcomes are information and educational materials for patients and their families. The intensive exchanges have also helped inform Roche policy on issues that are close to patients.

How it all began

Representatives of Roche and EGAN first met at a series of Think Tank meetings organised by the European Federation of Pharmaceutical Industries and Associations (EFPIA). In time, EGAN and Roche discovered that they had common ground on a

range of issues and decided to set up a joint working group with the initial aim: to increase communication and understanding between patient leaders and industry experts, and explore themes of mutual interest.

Cooperation agreement

After successful joint working group meetings in 2004 and 2005, EGAN and Roche decided to formalise the collaboration with a written agreement, one of the first between a patient organisation and a pharmaceutical company. Signed in September 2006, the agreement not only sets out the principles of cooperation, it also encapsulates the collaboration’s formula for success.

Principles of Cooperation between EGAN and Roche

  • The EGAN/Roche relationship shall be characterised by mutual respect, trust, genuineness and commitment.
  • The partners consider each other to be of equal value in the partnership.
  • The objectives and scope of the partnership shall be transparent to third parties and the public.

The partnership includes annual two-day workshops. The meetings, usually attended by around 25 representatives from a broad spectrum of European patient organisations, focus on issues of common interest in the biomedical and pharmaceutical research and policy field, such as clinical trials, animal testing, personalised medicine and biobanks, ethical issues, health technology assessments, and data sharing. Designed as a forum for deepening exchanges, the annual workshops often involve external speakers such as health economics experts, academics and politicians.

Formula for a successful partnership

The theme of the 2014 workshop was Trust and transparency. Says EGAN President Alastair Kent, open dialogue is another key to the success of the partnership. “Our dialogue is not limited to sharing common views,” he says. “Divergent opinions can be exchanged and further explored.”

Mr Kent sees considerable benefits for patients and patient organisations from such working collaborations. “The partnership with Roche gives us an insight into drug development processes. It enables us to understand the journey that has to be undertaken from a bright idea to an innovative treatment. And it’s an opportunity for us to talk to people who are making the decisions, to make sure that — as far as possible — the aspects of specific diseases that are most important to patients are addressed.”

Roche, for its part, benefits from having direct dialogue with patient representatives. Organisations like EGAN help Roche to understand what it is like to live with a disease, the challenges patients and their families face, and what they expect from diagnostics and treatments in the management of disease. The knowledge gained guides the company as it develops new medicines and tests, designs clinical trial programmes, seeks regulatory and reimbursement approvals, and provides patient support.

Key achievements

  • In 2008, with advice from EGAN, Roche developed new, patient-friendly versions of its informed consent forms for clinical trials. The forms, which are required by law, provide detailed information about a particular trial for potential participants. They also include a formal declaration of consent, which patients must sign before they can be recruited to the trial.
  • Roche helped EGAN to develop a series of informative, lay-friendly brochures on topics such as animal testing, clinical trials and patient registries. In each case EGAN provided lists of questions often raised by patients or their families. Roche experts then drafted answers, and EGAN checked to ensure that they could be understood by people with no medical training. The brochures were first published in English on the biomedinvo4all website and have also been translated into several other languages.
  • In 2011 the EGAN–Roche working party issued recommendations for improving patient involvement in the process of pharmaceutical development. The recommendations included an acknowledgement of the value of quality of life measures and other patient-reported outcomes in clinical trials.

Continuing the dialogue

Much has changed since 2004. Patients are more educated, and the internet and social media offer new ways for them to get information and interact. Even so, there is still no substitute for direct, real-world dialogue and cooperation between healthcare stakeholders. By representing patient views on issues that are central to healthcare, patient organisations help shape the healthcare environment.

Partnerships like the one between Roche and EGAN will thus continue to grow in importance, reflecting changing patient needs and expectations, responding to new issues and opportunities, and adapting to keep up with a constantly evolving healthcare landscape. “We want to continue this extremely valuable dialogue and cooperation,” says Nathalie Stieger, Roche’s Head of Government Affairs. “As we can see from the common themes, there’s still much for industry and patients to discuss and do.”

Tags: Partnering, Society