{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,5]],"date-time":"2026-10-05T00:33:41Z","timestamp":1791160421246,"version":"4.1.0"},"reference-count":57,"publisher":"BMJ","issue":"6","license":[{"start":{"date-parts":[[2023,6,27]],"date-time":"2023-06-27T00:00:00Z","timestamp":1687824000000},"content-version":"unspecified","delay-in-days":26,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000269","name":"ESRC","doi-asserted-by":"crossref","award":["2311285"],"award-info":[{"award-number":["2311285"]}],"id":[{"id":"10.13039\/501100000269","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000269","name":"ESRC","doi-asserted-by":"crossref","award":["2480077"],"award-info":[{"award-number":["2480077"]}],"id":[{"id":"10.13039\/501100000269","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2023,6,2]]},"published-print":{"date-parts":[[2023,6]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To assess the relationship between UK-based patient organisation funding and companies\u2019 commercial interests in rare and non-rare diseases in 2020.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Retrospective analysis of the value and volume of payments from pharmaceutical companies to patient organisations in the UK matched with data on the conditions supported by patient organisations and drugs in companies\u2019 approved portfolios and research and development pipelines.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>UK.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>74 pharmaceutical companies making payments to 341 UK-based patient organisations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main outcome measures<\/jats:title>\n                    <jats:p>Alignment between the commercial interests of pharmaceutical companies and the disease area focus of patient organisations; difference in the volume and value of payments to patient organisations broken down by prevalence of conditions; industry funding concentration, measured as the number of companies funding each patient organisation, the share of overall industry funding coming from each contributing company and the share of industry funding of each organisation comprised by the single highest payments.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>1422 payments were made by 74 companies to 341 patient organisations. Almost all funds (90%) from pharmaceutical companies were directed to patient organisations that are aligned with companies\u2019 approved drug portfolios and research and development pipelines. Despite rare diseases affecting less than 5% of the UK population, more than 20% of all payments were directed to patient organisations which target such conditions. Patient organisations focusing on rare diseases relied on payments from fewer companies (p value=0.0031) compared to organisations focusing on non-rare diseases.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Companies predominantly funded patient organisations operating in therapeutic areas relevant to companies\u2019 portfolio or drug development pipeline. Patient organisations focusing on rare diseases received more funding relative to the number of patients affected by these conditions and relied more heavily on payments from fewer companies compared to organisations targeting non-rare diseases. Increased independence of patient organisations could help avoid conflicts of interest.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2022-071138","type":"journal-article","created":{"date-parts":[[2023,6,27]],"date-time":"2023-06-27T12:16:04Z","timestamp":1687868164000},"page":"e071138","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":14,"title":["Industry funding of patient organisations in the UK: a retrospective study of commercial determinants, funding concentration and disease prevalence"],"prefix":"10.1136","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6943-6158","authenticated-orcid":false,"given":"Arianna","family":"Gentilini","sequence":"first","affiliation":[{"name":"Department of Health Policy, The London School of Economics and Political Science, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iva","family":"Parvanova","sequence":"additional","affiliation":[{"name":"Department of Health Policy, The London School of Economics and Political Science, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2023,6,27]]},"reference":[{"key":"2025121403273106000_13.6.e071138.1","unstructured":"EFPIA . EFPIA code of practice on the relationships between the pharmaceutical industry and patient organisations. European Federation of Pharmaceutical Industries and Associations 2011."},{"key":"2025121403273106000_13.6.e071138.2","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.l1806","article-title":"Exposing drug industry funding of UK patient organisations","volume":"365","author":"Ozieranski","year":"2019","journal-title":"BMJ"},{"key":"2025121403273106000_13.6.e071138.3","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1016\/j.drudis.2011.09.020","article-title":"Rare disease patient groups as clinical researchers","volume":"17","author":"Polich","year":"2012","journal-title":"Drug Discov Today"},{"key":"2025121403273106000_13.6.e071138.4","doi-asserted-by":"crossref","first-page":"612","DOI":"10.1177\/2168479017706405","article-title":"Improving patient involvement in medicines research and Development::A practical roadmap","volume":"51","author":"Geissler","year":"2017","journal-title":"Ther Innov Regul Sci"},{"key":"2025121403273106000_13.6.e071138.5","unstructured":"MHRA . Patient involvement strategy 2021-25. medicines and Healthcare products regulatory agency; 2020."},{"key":"2025121403273106000_13.6.e071138.6","unstructured":"MHRA . Putting patients first: A new era for our agency. delivery plan 2021-2023. Medicines and Healthcare products regulatory agency; 2020."},{"key":"2025121403273106000_13.6.e071138.7","unstructured":"NICE . Public involvement programme - overview of technology appraisals: A Factsheet for patient and Carer organisations: National Institute for health and care excellence. 2014."},{"key":"2025121403273106000_13.6.e071138.8","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.l6925","article-title":"Industry funding of patient and health consumer organisations: systematic review with meta-analysis","volume":"368","author":"Fabbri","year":"2020","journal-title":"BMJ"},{"key":"2025121403273106000_13.6.e071138.9","doi-asserted-by":"crossref","first-page":"344","DOI":"10.1001\/jamainternmed.2016.8443","article-title":"Patient advocacy organizations, industry funding, and conflicts of interest","volume":"177","author":"Rose","year":"2017","journal-title":"JAMA Intern Med"},{"key":"2025121403273106000_13.6.e071138.10","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0235021","article-title":"Five years of pharmaceutical industry funding of patient organisations in Sweden: cross-sectional study of companies, patient organisations and drugs","volume":"15","author":"Mulinari","year":"2020","journal-title":"PLoS One"},{"key":"2025121403273106000_13.6.e071138.11","doi-asserted-by":"crossref","first-page":"188","DOI":"10.1111\/1467-9566.13409","article-title":"A 'patient-industry complex'? investigating the financial dependency of UK patient organisations on drug company funding","volume":"44","author":"Ozieranski","year":"2022","journal-title":"Sociol Health Illn"},{"key":"2025121403273106000_13.6.e071138.12","doi-asserted-by":"crossref","first-page":"680","DOI":"10.1111\/jlme.12078","article-title":"Patient advocacy organizations: institutional conflicts of interest, trust, and trustworthiness","volume":"41","author":"Rose","year":"2013","journal-title":"J Law Med Ethics"},{"key":"2025121403273106000_13.6.e071138.13","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2021-055287","article-title":"National patient groups in Canada and their disclosure of relationships with pharmaceutical companies: a cross-sectional study","volume":"12","author":"Lexchin","year":"2022","journal-title":"BMJ Open"},{"key":"2025121403273106000_13.6.e071138.14","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.l6694","article-title":"Asset Exchange\"\u2014Interactions between patient groups and pharmaceutical industry: Australian qualitative study","volume":"367","author":"Parker","year":"2019","journal-title":"BMJ"},{"key":"2025121403273106000_13.6.e071138.15","doi-asserted-by":"crossref","first-page":"1256","DOI":"10.1016\/j.healthpol.2022.11.003","article-title":"Advancing International comparison of pharmaceutical industry funding of patient advocacy: focus on Denmark","volume":"126","author":"Mulinari","year":"2022","journal-title":"Health Policy"},{"key":"2025121403273106000_13.6.e071138.16","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2022-061591","article-title":"Comparing pharmaceutical company payments in the four UK countries: a cross-sectional and social network analysis","volume":"13","author":"Rickard","year":"2023","journal-title":"BMJ Open"},{"key":"2025121403273106000_13.6.e071138.17","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2020.1166"},{"key":"2025121403273106000_13.6.e071138.18","unstructured":"European Commission . Regulation (EC)No 141\/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products. 2000."},{"key":"2025121403273106000_13.6.e071138.19","unstructured":"Department of health &Amp;Amp;Amp;Amp; social care. policy paper - the UK rare diseases framework. 2021. Available: https:\/\/www.gov.uk\/government\/publications\/uk-rare-diseases-framework\/the-uk-rare-diseases-framework"},{"key":"2025121403273106000_13.6.e071138.20","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(08)60875-2"},{"key":"2025121403273106000_13.6.e071138.21","doi-asserted-by":"crossref","first-page":"102522","DOI":"10.1016\/j.jhealeco.2021.102522","article-title":"R&Amp;Amp;Amp;D and market size: who benefits from orphan drug legislation?","volume":"80","author":"Gamba","year":"2021","journal-title":"J Health Econ"},{"key":"2025121403273106000_13.6.e071138.22","unstructured":"Waxman HA . The Waxman Report: How Congress Really Works.1st edition. New York: Twelve, 2009."},{"key":"2025121403273106000_13.6.e071138.23","unstructured":"Office of the Federal register Naara . orphan drug act - 6 STAT USGP. 1983."},{"key":"2025121403273106000_13.6.e071138.24","doi-asserted-by":"crossref","unstructured":"Halley MC . From \"ought\" to \"is\": surfacing values in patient and family advocacy in rare diseases. 2021:1536\u20130075. doi:10.1080\/15265161.2021.1996801","DOI":"10.1080\/15265161.2021.1996801"},{"key":"2025121403273106000_13.6.e071138.25","doi-asserted-by":"crossref","unstructured":"Dunkle M , Pines W , Saltonstall PL . Advocacy groups and their role in rare diseases research. In: Posada de la Paz M , SC G , eds. Rare Diseases Epidemiology. Dordrecht: Springer Netherlands 2010:515-25, doi:10.1007\/978-90-481-9485-8","DOI":"10.1007\/978-90-481-9485-8_28"},{"key":"2025121403273106000_13.6.e071138.26","unstructured":"Scottish Medicines Consortium . (PACE) process. n.d. Available: https:\/\/www.scottishmedicines.org.uk\/how-we-decide\/pace\/2023"},{"key":"2025121403273106000_13.6.e071138.27","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2012.09.004"},{"key":"2025121403273106000_13.6.e071138.28","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2014-007199","article-title":"Effectiveness, safety and costs of orphan drugs: an evidence-based review","volume":"5","author":"Onakpoya","year":"2015","journal-title":"BMJ Open"},{"key":"2025121403273106000_13.6.e071138.29","unstructured":"Disclosure UK . ABPI patient organisations database. 2021. Available: https:\/\/search.disclosureuk.org.uk"},{"key":"2025121403273106000_13.6.e071138.30","unstructured":"PMCPA . ABPI code of practice. 2021. Available: https:\/\/www.pmcpa.org.uk\/the-code\/2021-interactive-abpi-code-of-practice"},{"key":"2025121403273106000_13.6.e071138.31","unstructured":"Disclosure UK . ABPI patient organisations database. 2021. Available: https:\/\/search.disclosureuk.org.uk\/2020"},{"key":"2025121403273106000_13.6.e071138.32","unstructured":"HMRC . HMRC yearly average and spot rates: HM revenue and customs. n.d. Available: https:\/\/www.gov.uk\/government\/publications\/exchange-rates-for-customs-and-vat-yearly"},{"key":"2025121403273106000_13.6.e071138.33","unstructured":"HMRC . HM revenue and customs. 2022. Available: https:\/\/www.gov.uk\/government\/publications\/exchange-rates-for-customs-and-vat-yearly"},{"key":"2025121403273106000_13.6.e071138.34","unstructured":"Orphanet . The portal for rare diseases and orphan drugs. 2022. Available: https:\/\/www.orpha.net\/consor\/cgi-bin\/Disease_Search_Simple.php?lng=EN"},{"key":"2025121403273106000_13.6.e071138.35","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2010.300027"},{"key":"2025121403273106000_13.6.e071138.36","unstructured":"European medicines agency . Criteria to be fulfilled by patient, consumer and Healthcare professional organisations involved in European medicines agency. 2018. Available: https:\/\/www.ema.europa.eu\/en\/documents\/regulatory-procedural-guideline\/criteria-be-fulfilled-patient-consumer-healthcare-professional-organisations-involved-european_en.pdf"},{"key":"2025121403273106000_13.6.e071138.37","unstructured":"NICE . Policy on declaring and managing interests for NICE advisory committees. 2018."},{"key":"2025121403273106000_13.6.e071138.38","unstructured":"WHO . ICD-11 for mortality and morbidity Statistics. 2022. Available: https:\/\/icd.who.int\/browse11\/l-m\/en#\/http:\/\/id.who.int\/icd\/entity\/465177735?view=G0"},{"key":"2025121403273106000_13.6.e071138.39","unstructured":"NITH U.S . National library of medicine. Clinicaltrials.Gov. n.d. Available: https:\/\/clinicaltrials.gov\/2022"},{"key":"2025121403273106000_13.6.e071138.40","doi-asserted-by":"crossref","DOI":"10.1001\/jamanetworkopen.2019.6253","article-title":"Analysis of pharmaceutical industry payments to UK health care organizations in 2015","volume":"2","author":"Ozieranski","year":"2019","journal-title":"JAMA Netw Open"},{"key":"2025121403273106000_13.6.e071138.41","unstructured":"Blood cancer UK.Blood cancer types. n.d. Available: https:\/\/bloodcancer.org.uk\/understanding-blood-cancer\/blood-cancer-types\/2023"},{"key":"2025121403273106000_13.6.e071138.42","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0164681","article-title":"Profitability and market value of orphan drug companies: A retrospective, propensity-matched case-control study","volume":"11","author":"Hughes","year":"2016","journal-title":"PLoS One"},{"key":"2025121403273106000_13.6.e071138.43","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMsr1610625"},{"key":"2025121403273106000_13.6.e071138.44","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.2008.01109.x"},{"key":"2025121403273106000_13.6.e071138.45","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.k5300","article-title":"Financial interests of patient organisations contributing to technology assessment at England's National Institute for health and care excellence: policy review","volume":"364","author":"Mandeville","year":"2019","journal-title":"BMJ"},{"key":"2025121403273106000_13.6.e071138.46","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1159\/000342758","article-title":"Involvement of patient organisations in research and development of orphan drugs for rare diseases in Europe","volume":"3","author":"Mavris","year":"2012","journal-title":"Mol Syndromol"},{"key":"2025121403273106000_13.6.e071138.47","doi-asserted-by":"crossref","unstructured":"Facey KM , Ploug Hansen H , Single ANV . Role of patient Organisations . In: Facey KM , Ploug Hansen H , Single ANV , eds. Patient involvement in health technology assessment. Singapore: SpringerSingapore, 2017: 401\u201310. doi:10.1007\/978-981-10-4068-9","DOI":"10.1007\/978-981-10-4068-9"},{"key":"2025121403273106000_13.6.e071138.48","unstructured":"European medicines agency . European public assessment reports (EPAR). 2022."},{"key":"2025121403273106000_13.6.e071138.49","unstructured":"Baggott R , Jones K . The big society in an age of austerity: threats and opportunities for health consumer and patients. Organizations in England 2015:1369\u20137625."},{"key":"2025121403273106000_13.6.e071138.50","doi-asserted-by":"crossref","first-page":"1243","DOI":"10.1136\/bmj.p1243","article-title":"Safeguarding NICE from patient groups' conflicts of interest","volume":"381","author":"Parvanova","year":"2023","journal-title":"BMJ"},{"key":"2025121403273106000_13.6.e071138.51","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0212399","article-title":"Association between commercial funding of Canadian patient groups and their views about funding of medicines: an observational study","volume":"14","author":"Lexchin","year":"2019","journal-title":"PLOS ONE"},{"key":"2025121403273106000_13.6.e071138.52","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2017.2308"},{"key":"2025121403273106000_13.6.e071138.53","unstructured":"Das S , Ungoed-Thomas J . Revealed: experts who praised new \u2018skinny jab\u2019 received payments from drug maker. The Guardian 2023."},{"key":"2025121403273106000_13.6.e071138.54","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2021-053138","article-title":"Accessibility and quality of drug company disclosures of payments to Healthcare professionals and organisations in 37 countries: a European policy review","volume":"11","author":"Ozieranski","year":"2021","journal-title":"BMJ Open"},{"key":"2025121403273106000_13.6.e071138.55","unstructured":"Vertex pharmaceuticals incorporated.Our science. n.d. Available: https:\/\/www.vrtx.com\/our-science\/2023"},{"key":"2025121403273106000_13.6.e071138.56","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2020-037351","article-title":"Under-reported relationship: a comparative study of pharmaceutical industry and patient Organisation payment disclosures in the UK (2012-2016)","volume":"10","author":"Ozieranski","year":"2020","journal-title":"BMJ Open"},{"key":"2025121403273106000_13.6.e071138.57","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0034974","article-title":"Patient organizations' funding from pharmaceutical companies: is disclosure clear, complete and accessible to the public? an Italian survey","volume":"7","author":"Colombo","year":"2012","journal-title":"PLoS One"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2022-071138","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,14]],"date-time":"2025-12-14T11:27:43Z","timestamp":1765711663000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2022-071138"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,6]]},"references-count":57,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2023,6,27]]},"published-print":{"date-parts":[[2023,6]]}},"alternative-id":["10.1136\/bmjopen-2022-071138"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2022-071138","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,6]]}}}