Study reveals financial interests of patient organizations assessing NHS treatments

More than two thirds of patient organisations involved in assessing treatments for NHS use received funding from the maker(s) or a competitor of that treatment, yet decision makers were aware of less than a quarter of these interests, finds a review in The BMJ today.

The researchers call for stronger policy on disclosure and greater transparency from patient organisations and manufacturers "to reassure the public that healthcare decisions are not unduly influenced by industry."

Involving patients in decisions on public funding of medicines and treatments is essential to an accurate and fair assessment of the value of new technologies.

At the National Institute for Health and Care Excellence (NICE) in England, patient organisations are often involved in assessing new and existing medicines and treatments for use by the NHS in England and Wales, known as technology appraisal.

Yet if patients' perspectives are truly given weight by decision makers, any potential bias must also be taken into account.

So a research team, led by Dr. Kate Mandeville at the London School of Hygiene & Tropical Medicine, set out to investigate the prevalence of financial interests among patient organisations contributing to technology appraisals at NICE—and the extent to which decision making committees are aware of these interests.

They assessed 53 patient organisations contributing to 41 NICE technology appraisals published in 2015 and 2016, with 117 separate occasions that a patient organisation contributed to the appraisal of a technology.

Pharmaceutical industry funding was determined from manufacturers' declarations and accounts, annual reports, websites, and responses from patient organisations.

They found that 38 of 53 (72%) patient organisations held specific interests (funding from manufacturer(s) of a technology under appraisal or competitor products in the same year that the patient organisation contributed to the appraisal or the year before).

Specific interests were present on 92 of 117 (79%) occasions that organisations contributed to appraisals.

Yet the results show that NICE's committees were aware of less than a quarter (30 of 144; 21%) of specific interests. And for nearly two thirds of the specific interests unknown to committees (71 of 114; 62%), disclosure by patient organisations was not required by NICE's current policy.

The main strength of this study is a systematic and comprehensive search for relevant interests of patient organisations, but the researchers point out that it was limited by incomplete and inconsistent reporting by patient organisations and manufacturers.

Nevertheless, they say their results provide a valid assessment that financial interests are highly prevalent among patient organisations contributing to health technology assessment, and such interests need to be systematically identified to improve transparency.

As such, they call for a more robust disclosure framework and greater transparency from patient organisations and manufacturers "to sustain the patient's voice in policy and reassure the public that healthcare decisions are not unduly influenced by industry."

These findings contribute substantively to the broader picture of the influence of industry in patient organizations, and suggest that voluntary disclosure isn't working, write US researchers in a linked editorial.

Bethany Bruno and Susannah Rose at the Cleveland Clinic say for NICE (and its counterparts in other countries) to better judge and interpret recommendations made by patient organizations, "its policies must require disclosure in all circumstances."

And they call for additional legislation and organizational policies to ensure that all stakeholders can "react in a meaningful way to the information disclosed."