Patient Groups Managing Funding Transparently

Patient groups have diverse and strongly held views about whether to seek or receive funding from commercial organisations, particularly pharmaceutical companies. However, there is general acceptance that whenever a group needs does receive funding, it needs to be transparent about it.

Beyond the legal need

Although regulations and industry practice vary across the world, pharmaceutical companies generally have a requirement to report all funding they give to patient groups, and should have compliance systems and staff in place to do this. Without these systems and resources, it can be harder for patient groups to find clear and meaningful ways to show why they have received funding from pharmaceutical companies.

Hitting the detail balance

In some countries and therapy areas, corporate funding can come from any sector including finance, retail and automative. These can feel less sensitive than life-science funding which carries with it potential risk of accusations of influence.  

Patient groups tell us that that when pharmaceutical companies report their funding of groups, it should be in enough detail to make clear what the funding was for, such as the goal of a joint project.  

Although a pharmaceutical donor should in theory consult the patient group it has donated to in order to agree a public description, this does not always happen. However, patient groups can take their own control of this through adding clear descriptions to their own funding pages on their sites.

Step 1: Demonstrate independence

The long-established UK group, NAM AIDSmap, pulls together in one place its diverse funding sources. 

Its funding page includes a statement on how it maintains its independence when working with pharma:

“We are fortunate to receive some funds from the pharmaceutical industry, which has been generous in supporting community-based HIV treatment information work. Their support is long-standing and has provided security in a rapidly changing funding environment. However, we have strict funding guidelines in place to ensure the independence and impartiality of all our information. There is no question of their being able to interfere with our editorial stance or influence us in any other way that undermines our independence. The pharmaceutical companies understand and honour our position on this.” – NAM AIDSmap

Step 2: Publicise clear funding guidelines

NAM AIDSmap offer a prominent link to a 3 page document of their funding guidelines, which importantly includes a clear process and points of contact for questions or concerns about the organisation’s editorial independence.

Step 3: Enable breadth and depth

NAM AIDSmap brings together in one place all its funding sources in one simple table. Each item in the table describes each project funded and who funded it, including links to the funders. Crucially, the group includes in the description links for more in-depth information on each project.

As the group aims for a balance of funding types its reporting table is organised by types of funder including:

  • Charitable trusts and foundations
  • Statutory funders eg public health bodies
  • Conference organisers
  • Non-Governmental Organisations
  • Pharmaceutical companies.

Whereas many groups tend to report this type of information annually, for example in line with their annual reports or accounts, the team at NAM AIDSmap seem to keep this reporting current, updating their table when new funding happens.

Where next in transparency funding?

Patient groups regularly share their concerns with us about the challenges in finding quality information about how pharma funds patient groups and other health stakeholders. In some countries these are organised by the industry into single dedicated sites covering all companies in a consistent format. In other countries this information may be scattered across parts of individual websites, with reporting in varying amounts of detail. Because local regulation or industry rules often impose a reporting cycle on the companies, groups say that it can take a long time for information to be posted, and then even longer to correct any mistakes.

Although increasingly tight regulation and rules on transparency have resulted in more reporting by industry, further improvements may take some time. In the meantime, groups like NAM AIDSmap are showing that patient organisations can lead the way and take better control of their own transparency reporting.

NEXT STEPS:

See how NAM AIDSmap publicise their funding sources at…

Click here

Download the group’s funding guidelines at…

Click here

View GSK’s global page on funding for patient organisations at…

Click here



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