Engagement of patient groups

The European Federation of Pharmaceutical Industries and Associations (EFPIA) has issued this week new guidance on working with patient groups. The document has been prepared by the EFPIA Patient Think Tank, which is a forum comprised of representatives of patient organisations and the research-based pharmaceutical industry.

The new guide provides an additional point of reference and supplements the 2011 EFPIA Patient Organisation Code of Practice. It underlines the rationale for interactions between the pharmaceutical industry and patient organisations, providing clear principles that justify engagement between these two groups and a practical list of potential hurdles and proposed solutions. It is not applicable to interactions with individual patients but the rationale underpinning the guide may be applied to such interactions too.

Principles for Engagement

The guide recognises the benefits of effective collaboration between patient organisations and industry in ensuring that the patient perspective is taken into account when decisions which affect patients are made. However establishing an appropriate engagement between the industry and patients organisations without breaching the legal restrictions governing these interactions represents a challenge. The following 5 principles have been distilled by the Think Tank as necessary to ensure compliance:

  • Clarity of Purpose – a legitimate need for the interaction and the desired outcomes must be identified in advance.
  • Transparency – of aims and in particular of financial relationships between the two groups; any compensation paid to patient organisations and their representatives, should be proportional and commensurate with experience, expertise and time invested.
  • Independence – of decision-making, policies and communications helps to ensure credibility; funding from a wide range of sources is therefore always preferable. (NB: the EFPIA Patient Organisation Code prohibits its members from requiring to be sole funders of patient organisations or patient organisation’s activities.)
  • Mutual Respect – reflecting a collaborative approach, valuing the contribution of both parties.
  • Non-interference in the healthcare professional-patient relationship.


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