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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, according to new research published in the .

The research team, led by the ������app of Hygiene & Tropical Medicine, is calling 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 (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.

The study team investigated 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.

Dr Kate Mandeville, lead author from the ������app of Hygiene & Tropical Medicine, said: “It is essential that patients can contribute to decisions over which new drugs should be made available on the NHS. Patients’ perspectives give important information on the impact of the condition and lead to better decisions.

“NICE has been a pioneer in involving patients in drug decisions, and the high level of contributions from patient organisations seen in our study is an indicator of success. However, we found that NICE’s disclosure policy does not provide decision makers with enough information on funding received by patient organisations from drug manufacturers.

“NICE needs to urgently strengthen its disclosure policy for patient organisations to reassure the public that drug decisions are not unduly influenced by industry.”

The authors 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.

Although the study was strengthened by using a systematic and comprehensive search for relevant interests of patient organisations, the researchers acknowledge the limitations, including some incomplete and inconsistent reporting by patient organisations and manufacturers.

Publication

Kate L Mandeville, Rosie Barker, Alice Packham, Charlotte Sowerby, Kielan Yarrow, Hannah Patrick. . BMJ. DOI: 10.1136/BMJ.K5300