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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?

For a full overview of 10 years cooperation of EGAN and Roche see brochure.

 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): 

Recommendations 2014


“Trust and Transparency”

Basel, 20-21 January, 2014

With their 10th joint workshop, the Patients Network for Medical Research and Health (EGAN) and Roche continue their constructive cooperation and once more provide a prime example of how patient advocacy groups and industry can efficiently cooperate to promote health. 
The 2014 workshop marked the 10 year anniversary of the EGAN-Roche cooperation in the spirit of two key principles that dominated the workshop agenda – Trust and Transparency. These topics were discussed in the contexts of patient-industry interaction and public private partnerships for research.
Negative public perception of such partnerships has resulted in an overload of codes of practices and transparency requirements (such as financial reporting), often resulting in a high administrative burden for all parties.
Participants heard presentations and engaged in break-out sessions to discuss how trust in such partnerships can be restored, and how transparency can be an effective means to this end. Guiding questions were:

  •  How can we counter the frequent reproach that the relationship between patient groups and industry is unhealthy?
  • What does a well-balanced governance structure look like?
  • How can we ensure we have a mature long-term relationship?
  • What is the purpose of transparency, and what is the right level to serve this purpose?
  • How can we ensure that codes of practice and transparency requirements are compatible and consistent?

The workshop discussions and recommendations are summarised below. They are intended to guide interactions and partnerships between patient groups with industry and other stakeholders in the public and private health community.
Recommendations to promote trust and transparency in partnerships

  1. Partnerships should be based on a Memorandum of Understanding (MoU) and follow a code of conduct. The MoU should state governing principles such as mutual respect, open discussions, and include a shared set of goals. It should be proactively communicated. There is a need for a universally agreed declaration/policy on interactions as well as standards and templates for MoUs. This could be the subject of a major conference.
  2. A successful governance structure for partnerships is characterized by clarity around common goals, expectations and assumptions. The structure must allow the parties to disagree but, once a group decision is taken, the parties must be able commit to that decision. The group's decisions need to stand up to scrutiny when being transparent.
  3. External disclosure to serve transparency should focus on the purpose, nature and impact of the partnership. Reporting finances becomes meaningful only when the context is provided. Current transparency demands are too convoluted and sometimes disproportional. Excessive detail in reporting ties up time and resources that could be spent pursuing common goals. This impacts especially patient organisations which face scarce resources or rely on voluntary work.
  4. The multitude of codes of practices and their diverging national interpretations is a serious problem. An aligned and consistent interpretation of codes is needed. In case of differing codes, a first step could be to try identifying the common harm which they aim to prevent. Legal and compliance departments are an important audience to engage in the discussion. Contract templates and processes must be easy to understand and follow. Compliance efforts must not result in an undue administrative burden which consumes scarce patient group resources.
  5. External communication should focus on common goals and outcomes of partnerships, instead of putting one stakeholder in the centre of the picture. It should be proud, assertive, proactive and aimed at highlighting positive case studies. It should target those who are open to listen and engage in debate.
  6. Declarations of interest are a common feature when stakeholders meet to share expertise and advice on healthcare. One example is when advising regulatory authorities. Participants noted that norms and forms are not always fit for purpose. As a simple remedy, the terminology in that context should be changed to declare interests rather than conflicts of interests. This would allow the outside world to judge for itself to what extent a 'conflict' exists. It could help prevent situations where key experts are excluded from important discussions.
Recommendations 2013


Sustainable Healthcare

Basel, 17-18 January, 2013

With the 9th joint workshop, the Patients Network for Medical Research and Health (EGAN) and
Roche continue their constructive cooperation and once more provide a prime example on how
patient advocacy groups and industry can efficiently cooperate to promote health.

The 2013 Workshop focused on two aspects of Sustainable Healthcare:

  • The Economic Crisis and External Constraints of Healthcare Systems: On day one,participants discussed how patients' needs and experiences can be better included whensociety decides, through Health Technology Assessment (HTA), how it values healthcareinterventions such as medicines.
  • A Rethinking of Development Models: On day two, participants discussed the advisory role of patients in the clinical research process, as well as the risks and opportunities with socialmedia in the context of care and research.The workshop discussions are summarised below to inform stakeholders and decision makers active in the area of promoting health.

Sustainable Healthcare I: The Economic Crisis and External Constraints of Healthcare

  1. Patient involvement needs to start at an early stage of the HTA procedure, which is amultidisciplinary process to show the value of healthcare interventions such as medicines.
  2. Patient input should be collected at sufficiently high levels of decision-making in HTAagencies. Appropriate time and resources should be set aside by HTA agencies to includepatients.
  3. Patients can ensure that patient-relevant aspects and societal aspects of healthcare interventions are appropriately regarded in HTA.
  4. Patient representatives to HTA processes need adequate training to participate in a way that ismeaningful. Such training must include both knowledge about HTA tools and processes andcommunication tools. Patient representatives should ensure that HTA knowledge/experience gained is spread within their organisations for sustainability reasons.
  5. Patient representatives need to gather and present data that are useful for the process. Datagathering must start early enough to be ready as soon as the HTA process starts.
  6. Training is needed on how and when to gather data of the quality that is necessary to informHTA processes.
  7. Both HTA experts and patients need to recognise and respect that they may use differentterminology, and make an effort to communicate information in a way that is clear and usefulfor the other side.
  8. All involved stakeholders must agree that patient-relevant outcomes are an accepted measurein HTA.

Sustainable Healthcare II: A Rethinking of Development Models

  1. The impact of the information society and the use of the internet have transformed the waycitizens inform themselves before taking important decisions. This development has a hugepotential to positively contribute to patient-centred healthcare decision making, provided it iscoupled with the right tools to ensure patient empowerment.
  2. With the great opportunities for interaction and for sharing information that are offered, for example, by social media and electronic health records, also come risks. Clarity on data ownership and adequate data protection are needed to ensure privacy and to avoid themisuse of personal information. In this context, non-discrimination legislation should beconsidered at the EU level. At the same time, users of social media need to be aware thatsuch media are difficult to control and thus, per se, involve a certain element of risk.
  3. The desire of patients to be more involved extends beyond the patient-doctor setting and theindividual treatment- and care decisions. Patients also want to be partners and advisors in theclinical trial process.
  4. Patients who participate in clinical trials (as subjects) would welcome clearer and morecomprehensive communication about the trial, before, during and after its active phase.
  5. Health literacy and education are key tools to ensure that patients and patient representatives are empowered to use the digital opportunities to their advantage, and to play a consultativerole in the clinical trial process.
  6. To enable patients to advise on clinical trials, stakeholder cooperation should be promotedvery early on in the research process. Such cooperation should bring together patients andthose who develop medicines to identify research targets that address true patient needs for their medical conditions.
Recommendations 2012

Recommendations from the EGAN / ROCHE STRATEGY WORKSHOP

“Data sharing & Therapy development: Possibilities and Pitfalls”

Basel, 12-13 January, 2012

With the 8th joint Workshop, the Patients Network for Medical Research and Health (EGAN) and
Roche continue their constructive cooperation and once more provide a prime example on how patient
advocacy groups and industry can efficiently cooperate to promote health. The 2012 Workshop focused on issues and opportunities related to the sharing and handling of patient data in the context of research to better understand diseases and improve treatment and care for patients. The Workshop resulted in the following
recommendations for stakeholders and decision makers active in the area of promoting health. Recommendations on the collection and use of data in patient registries.

  1.  Patient registries1 should be used as a tool for research on improved treatments and enhanced quality of patient care.
  2. In order to make the data useful for research purposes, all patient registries should contain a minimum standardized content, “Core Mandatory Data”, that is collected an displayed in a standardized manner. This Core Mandatory Data could be complemented by phenotypic and genotypic data relevant to the respective diseases that are the subject of the register, with the additional data also collected in a harmonised forma .
  3. A set of standardized criteria that apply to patient registries across all disease areas, e.g. a common date format for collected data, should be worked out in cooperation between political stakeholders, regulators, patient organisations, academia and the industry, and take into account previous experience/best practice from these stakeholder groups.A database where information about patient characteristics is stored, such as diagnosis, family history, treatment- and care aspects.
  4. There should be a legitimate and justified process in place for ensuring that data collection and use is carried out in an ethical manner, protects the individual from discrimination and respects their rights to privacy and informed decision making on how one’s data are used. An appropriate and proportionate process for securing informed consent from patient volunteers must be in place.
  5. Patient organisations that host and take care of patient registries require sustainable support, e.g. funding or provision of fit-for-purpose data processing software. A long-term approach is essential to ensure that the data in the registry are suitable for research purposes, in particular to ensure that the data are kept up to date over time, that patients are regularly informed and consent to any changes of relevance for them and that the data remaincomparable.
  6.  As patient registry initiatives are often successfully initiated and led by dedicated individuals with a personal commitment, such individuals need to be identified and supported, in particular in countries facing a lack of resources for supporting the civil society.

Recommendations related to scientific possibilities enabled by data sharing

  1. Incidental findings (=useful research findings that were not actively sought) are an important issue for medical researchers. Recent progress – for example in sequencing techniques – means that incidental findings are almost inevitable where these techniques are employed. In order to maximize the value of these to the research community, and to protectthe interests of patients who may not wish to know of possible future disease risks, policies must be put in place for the handling and disclosure (or non-disclosure) of incidental findings prior to starting the data generation process. These must be clearly communicated to patient volunteers as part of the consent process. 
  2. Principles for how to deal with incidental findings must be discussed and standardized in a multi-stakeholder setting.
  3. There is a need to raise awareness amongst practicing clinicians of scientific developments in order to facilitate data collection.
  4. How to balance this educational need with the sheer amount of information is something that must be discussed between all stakeholders.
  5. There is an urgent need to manage public expectations on breakthroughs in genetic research, on the causes of diseases and how this may help patients.
  6. In cases where it may take time to translate a scientific breakthrough into an actual treatment, all stakeholders should report responsibly on genetic research progress, in order to not raise false hopes in patients suffering from a life-threatening disease.

Recommendations for regulatory framework on data protection in the EU

  1. The upcoming changes to the EU regulatory framework for data protection must not placedisproportionate administrative burdens on patient organisations and researchers whocreate patient registries that are essential tools for medical and epidemiological research in theinterest of improved treatment and care for patients. Likewise, penalties for offenses must be proportionate and reasonable.
  2. Any blanket exception for genetic information in upcoming legislation on data protection, “genetic exceptionalism”, is highly inappropriate. Genetic data should be safeguarded by adopting and implementing high standards of quality and confidentiality as with any other sensitive medical data.

These recommendations have been formulated by EGAN and Roche based on the Workshop
deliberations and discussions and are meant as a basis for further actions.

Recommendations 2011


“From Research to Clinical Practice”
Basel, 13-14 January, 2011

With the 7th joint Workshop, EGAN and Roche continue their productive and constructive cooperation and give again a prime example demonstrating how patient advocacy groups and industry can efficiently cooperate and contribute to promote health. Participants from academia, patient organisations, health authorities and industry attended this year´s Workshop to discuss topics of common interest and develop strategies and recommendations aiming to serve as a basis for further actions. In 2011, the Workshop focused on steps to improve the long process from basic research to clinical practice, including better patient involvement:


The following recommendations have been developed by the Workshop participants with the objective of contributing to health promotion through effective clinical research and practice:

  1. Promote stakeholder cooperation very early on in the research process; by bringing academia, patients and industry together to identify research targets that address true patient needs for their medical conditions.
  2. Acknowledge and communicate the importance of basic research and how it is at the core of scientific progress even when the translational impact and thereby clinical benefit is not straightaway evident.
  3. Develop and promote a harmonised and transparent framework during the long process from research to patient access, particularly in the fields of clinical research and HTA, by fostering harmonisation.
  4. Promote the acknowledgement and use of “soft endpoints” in clinical trials, such as Quality of Life and consequences for family members and/or carers, which are not directly associated with the disease process, and which therefore require different approaches to be effectively assessed.
  5. Strive for a balance between hard and soft endpoints in clinical trials to represent a holistic, patient-relevant picture of the whole treatment.
  6. Modernise and enhance the current clinical trial process to:
  • Adapt it to the changing understanding of our biology and of the drug development environment.
  • Find ways to shorten the process by avoiding complications through harmonisation and in concentrating the trial design on the essentials.
  • Acknowledge the concept of personalised healthcare as a completely different healthcare paradigm.
  • Use the upcoming revision of the EU Clinical Trials Directive as an opportunity to achieve improvements in various areas, e.g. to address the impact of stratified medicine and drugs for small populations.
  1. Increase patient participation in clinical trials by developing communication strategies to work with physicians and investigators with the aim of better informing patients and their families.
  2. Strengthen the communication capacity of patient organisations to interact with regulatory and reimbursement authorities. As there is still a lack of patient perspectives in some European countries: patients need to be able to engage effectively with their national authorities to ensure patient views are duly regarded throughout the entire thought- and decision processes. 
  3. Enhance communication between patient groups on European and national levels to ensure that patient groups speak with one voice at the EU level. Patient representatives of pan-European organisations need to recognise the role of national patient bodies and foster discussion about strategies for effective patient involvement at the national as well as the EU level.
  4. In addition to disease prevention, promote effective chronic disease management to reflect the demographic shift towards an increasingly older population that is more likely to suffer from chronic disease.

The above recommendations have been developed by EGAN and Roche as an outcome of the Workshop deliberations and discussions and are meant as a basis for further actions.