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“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.


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