The ABPI/National Voices guide, “Working Together, Delivering For Patients” sets out four guiding principles that should underpin all collaborative working between industry and patient organisations.

  • Clarity of purpose: each party should be clear about the reason for and the planned outcome of the collaboration – and the ultimate benefit for patients
  • Integrity: each party should act, and be seen to act, honestly and with integrity at all times Independence: each party should maintain their independence
  • Transparency: each party should be open and honest about the purpose of the collaboration and be able to account publicly for the associated activities and any exchanges of funding.

Here are some good questions to ask when setting up a new partnership:

  • Why do I want to work with this organisation?
  • How will patients ultimately benefit?
  • How will I involve patients?
  • What is the benefit to my organisation?
  • Who decides on the scope of work?
  • If everything was in the public domain, what would it look like?
  • What money or benefits are involved?
  • How will transparency be achieved?

The ABPI Code covers relationships with patient organisations in detail in Clause 27 and related supplementary information, including a checklist covering the minimum requirements for the written agreement that is required when a patient organisation works with a pharmaceutical company. The agreement must be certified, as set out in Clause 14.3.

The written agreement must include:

✔ Name of the activity

✔ Names of the organisations involved (pharmaceutical companies, patient organisations and any third parties which will be brought in to help)

✔ Type of activity (e.g. unrestricted grant, specific meeting or publication etc.)

✔ Objectives

✔ Respective roles of the company and the patient organisation

✔ Time-frame

✔ Amount of funding

✔ Description of significant indirect/nonfinancial support (e.g. the donation of public relations agency time or free training courses)

✔ Statement that all parties are fully aware that sponsorship must be clearly acknowledged and apparent from the start

✔ Code or codes of practice which will apply

✔ Signatories to the agreement

✔ Date of the agreement

Bear in mind that while large patient organisations may be more familiar with agreements and have the resources to draft and scrutinise them, individuals or small organisations may not. Be careful that you are not excluding people or groups by insisting on an overly complex document – and use plain English. The Plain English Campaign is a good source of writing guides, including one on medical information.

Patient Focused Medicines Development, the Workgroup of European Patient Advocacy Networks (WECAN) and Myeloma Patients Europe are developing a guide to Reasonable Agreements between Patient Advocates and Pharmaceutical Companies. Their work addresses the concern that agreements are often too long or complex and can put patient organisations or advocates in a vulnerable position. To note, we are yet to see how the outputs from this work will align with the ABPI Code of Practice.

Note that a company cannot require that it is the sole funder or sponsor of a patient organisation.

However, a patient organisation may choose, of its own will, to work with just one commercial organisation. The IFPMA explains this point in the Q&A in its 2019 Code (the ABPI Code incorporates the principles set out in the IFPMA Code):

What happens if only one pharmaceutical company wishes to support a particular patient organization? Is this allowed?

Yes. Many patient organizations are supported by a number of pharmaceutical companies.

There may, however, be situations where only one pharmaceutical company wishes to support a particular patient organization or one of its activities. It would be acceptable under the IFPMA Code for that pharmaceutical company to be the only pharmaceutical company providing funding as long as that company did not make its support conditional on it being the sole funder.

Companies should bear in mind that commercial structures can be complicated for people outside the commercial world to navigate.

Representatives of patient organisations may have very limited time or resources to devote to administration, so it is really helpful if the company can provide a consistent, single point of contact and take time to smooth the path.

The Association of Medical Research Charities (AMRC) recommends that “charities should aim to have an established point of contact in their partner company and a specific member of staff who leads on managing the relationship.” (AMRC (2014) An Essential Partnership: A guide for charities working with industry. London: AMRC.)