Charities and patient organisations, like Neuroendocrine Cancer UK, alongside individual patients, play a crucial role in optimising equitable patient care: driving forward, facilitating and supporting, access to expert care, research and innovation. We are often the “go to place” for researchers, industry and other stakeholders – seeking information about the ‘lived experience’, and the impact, opinions and needs of those with a particular diagnosis.
But for our contributions to be sustainable: fair and transparent practices are essential.
The newly published Fair Market Value (FMV) guidance urges partner organisations to adopt Fair Market Value recommendations to ensure the sector’s continued growth and recognition.
The new guidance makes five key recommendations:
- Full cost-recovery to support charity sustainability.
- Minimum entry point of £100/€120 per hour for the work of charities / patient organisations.
- Equity of payment with healthcare professionals where this is higher than the Patient Focused Medicines Development rate.
- Market value add-on costs which take into account the intangible ‘brand’ benefits of partnering.
- Fair contracting with FMV rates set from the start and 30-day payment terms.
We both welcome and endorse the Fair Market Value (FMV) Guidance that has now been launched, to bring consistency to reimbursement for cross-sector partnership work.
See Fair Market Value Guidance for full details.
This guidance is a collaborative effort: Cancer52 (and their members) worked on this guidance with the Charities Research Involvement Group (CRIG), Health Research Charities Ireland (HRCI), the National Rheumatoid Arthritis Society (NRAS) and the Patient Information Forum (PIF).
