NHS joint working with industry is out of public sight
BMJ 2019; 364 doi: https://doi.org/10.1136/bmj.l1353 (Published 27 March 2019) Cite this as: BMJ 2019;364:l1353
NHS organisations are entering into working partnerships with drug companies, but the details, and even existence, of many of these deals are not being made available to the public, a BMJ investigation has found.
With government encouragement, the number of “joint working arrangements” is growing in England, and they brought more than £7.5m (€8.7m; $9.9m) into the health service in 2016 and 2017. Examples include several projects to review the medications of people with attention-deficit/hyperactivity disorder and more than 20 that focus on patients with age-related macular degeneration. But many of these agreements ignore official guidance that urges openness and transparency (box 1).
What are joint working arrangements?
Joint working arrangement is the term used to refer to initiatives that involve shared investment by the NHS and drug companies. They are designed to bring benefits to patients, the NHS, and the companies. They were proposed in the 2006 white paper Our Health, Our Care, Our Say as a new way for the industry to collaborate with the NHS.1 In 2008 the NHS and Department of Health for England published guidance on how the arrangements should work.2 And in 2010, the NHS, the health department, and the Association of the British Pharmaceutical Industry published a toolkit to support their development.3
RETURN TO TEXTThe BMJ, working with a team of university researchers, used freedom of information (FOI) requests to get details of these arrangements (box 2). It found that a fifth of trusts would not release details of the deals. In one concerning example, a contract allowed for a drug company to be informed of any FOI request relating to the joint working arrangement, and the trust agreed that it would give “proper consideration” to any “representation” made by the company in that regard. In another, the monetary details of a trust’s joint agreement with a drug company were not recorded in the trust’s financial records.
The BMJ’s investigation
The BMJ worked with the researchers Piotr Ozieranski and Britta Katharina Matthes from the University of Bath and Shai Mulinari from Lund University in Sweden to look at how many trusts were involved in joint working arrangements in 2016 and 2017 and what joint working policies trusts had in place.
The team sent freedom of information requests to all 194 acute care NHS trusts in England. All the requests were acknowledged, and 173 trusts (89%) provided responses. The researchers compared this information with companies’ declarations in the Disclosure UK database and in details listed on companies’ websites.
The researchers plan to publish their full findings in the coming months.
RETURN TO TEXTDrug companies disclose the funding for these projects in their declarations of payments to health professionals and organisations and often publish information about the projects on their websites. But patients, members of the public, and healthcare workers seeking information from their local trust about projects in which it has been involved would in many cases not be able to access it. The BMJ’s findings have drawn concerns that these joint working arrangements camouflage underfunding of the NHS, that partnering with industry risks influencing doctors’ clinical decisions, and that it is unethical not to open up these deals to public scrutiny.
The growth of these NHS collaborations with drug companies is only expected to continue under the NHS Long Term Plan, which lays out plans to treble the NHS’s contracts and collaborative research with the industry over the next decade. The Disclosure UK database of payments from drug companies to UK health professionals and organisations shows that 51 of the 194 acute care NHS trusts in England (26%) were involved in joint working in 2016 and 2017.4 Companies spent £3m in 2016 and £4.7m in 2017 on joint working arrangements.
Over half of the money spent by drug companies on joint working in the UK went to acute care NHS trusts in England, with some trusts receiving several payments. Funding also went to primary care organisations across the UK and to acute care trusts in Northern Ireland, Scotland, and Wales. From 2016 to 2017 the number of payments from drug companies to NHS acute care trusts in England under joint working arrangements rose by 52%, from 60 payments worth a total of £2.2m in 2016 to 91 totalling £2.3m in 2017.
The industry says that joint working projects can accelerate the spread of new treatments. “Joint working looks to pool resources and expertise behind an NHS priority to deliver improvements faster than if we all worked in silos,” says Elaine Towell, head of media at the Association of the British Pharmaceutical Industry (ABPI).
Buckinghamshire Healthcare NHS Trust says it has seen considerable benefits from such an approach. “The trust partnered with a pharmaceutical supplier in 2016 to create a new eye facility at one of its hospitals to increase patient access,” a spokeswoman said. “The benefits from a trust and patient point of view have been significant.”
This project, a collaboration with Novartis, involved three new clinic rooms, two scanning rooms, one vision bay, and one injection room for patients with wet age-related macular degeneration. One of the project’s aims was to enable 90% of patients to receive treatment for wet age-related macular degeneration within one week of diagnosis.
NHS underfunding concealed
But Cathy Augustine, who sits on the national steering group of the Keep Our NHS Public campaigning group, argues that allowing industry to provide NHS services in this way helps to mask the degree of government under-resourcing. “Services should be fully funded by the NHS,” she says. “This approach not only opens the door wider to private interference and privatisation of our national health service, but it also draws a veil over the underfunding that is in place—it camouflages the underfunding.”
The BMJ’s investigation revealed a lack of transparency in joint working arrangements. The guidance of the NHS and Department of Health is clear that joint working agreements must be conducted in an “open and transparent” manner.2 “There should be sufficient transparency about NHS activities to promote confidence between the organisation and its staff, patients, and the public,” it says.
Trusts are also expected to record and monitor all funding agreements related to the joint working projects.
Despite this guidance, 35 acute care trusts (18% of the total in England) refused to release information in response to The BMJ’s request. Twelve (6%) said that providing the information would prejudice the trust’s commercial interests, eight (4%) said that the time it would take to find the information would breach the limit for FOI requests, and two (1%) said that the information had been provided in confidence so could not be released. A further 13 (7%) said that they did not keep a central record of any such arrangements and so could not provide the information. Other trusts claimed not to know about joint working arrangements (box 3).
“This is not a term used by the trust”
Some NHS trusts said that they did not keep a register of joint working arrangements, while others said that they “did not recognise” or were “not familiar” with the term “joint working arrangements.” In total, 80 trusts used different terms for these arrangements, either in addition to the term “joint working arrangements” or in place of it.
One trust, when asked whether it was involved in any joint working arrangements, replied by saying, “‘Joint working arrangements’—this is not a term used by the trust.” When sent details of a joint working project involving the trust, along with the NHS and health department’s definition of joint working, a spokeswoman acknowledged that the project did fit this definition. But she went on to say, “The trust does not categorise contracts as ‘joint working arrangements’ as we do not find it helpful to do so.”
RETURN TO TEXTOne trust said that disclosing information to The BMJ “would be detrimental to the commercial interest” of the trust and could “prejudice the position of the trust in maintaining its competitiveness as a public authority.” Another said that details of the amount of money the NHS had contributed to a particular joint working arrangement could not be released. “The trust has made a proportionate contribution which, in the interests of confidentiality, we are not able to describe in more detail,” it said.
The BMJ asked all trusts involved in joint working arrangements to provide details of the documents underpinning the projects, but only one trust provided such a document (box 4).
A joint working arrangement in east London
The agreement between the drug company Novartis and east London’s Barking, Havering and Redbridge University Hospitals NHS Trust is for a nurse led project to develop the trust’s service for patients with myeloproliferative neoplasms.
Novartis jointly funds a clinical nurse specialist service to relieve pressure on overstretched outpatient haematology clinics at Queen’s Hospital in Romford. The agreement says, “These clinics are frequently overbooked with long ‘in clinic’ waiting times leaving less time for treatment reviews, exploring potential underlying problems and complex cases.” The service also works with patients with long term illness being treated through a telephone and repeat prescription service and who may be in need of a “treatment review.”
As part of the deal, the trust agreed that in the event of a freedom of information request it would “give proper consideration to any representation made” by the company before deciding how to respond. The deal also allows Novartis to raise objections concerning any organisations that the NHS chooses to work with as part of the project.
RETURN TO TEXTRobert Morley, executive secretary of Birmingham Local Medical Committee, points out that NHS organisations have clear obligations to be open and transparent about the details of any joint working initiatives in which they are involved.
“The lack of transparency by trusts over these arrangements is truly shocking,” he says. “For them to use the lame excuse of commercial confidentiality in order to disguise what’s going on would appear to constitute blatant neglect of their obligations.”
Register of joint working
Alongside the need for transparency over joint working, the health department and NHS guidance is also specific about the need for each NHS organisation to have a central register of such initiatives.
Yet 13 trusts said that they could not provide the information requested by The BMJ because they did not keep a central record of any such arrangements. One trust said that it could not provide the relevant details because the information was held by one person who no longer worked at the trust. Others said that the information was held by particular individuals in different departments, rather than being in a central register.
Of the 13 trusts that said they couldn’t provide information because they didn’t have a central register, eight were listed in drug companies’ declarations of payments for joint working.
Even when trusts did provide details of joint working, the information they provided was often inaccurate or contradicted by other sources.
A total of 39 trusts said they did not have any joint working arrangements even though The BMJ’s investigation found them listed as being involved in joint working initiatives on either drug company websites or in the Disclosure UK database. Payment information from Disclosure UK indicates that the projects these trusts were involved in accounted for £2.6m of the £7.7m in payments from drug companies for joint working in 2016 and 2017.
The BMJ asked trusts about the discrepancies between their FOI responses and the information provided by drug companies. In response, many trusts said that the discrepancy resulted from the fact that they did not have any central record of such arrangements. “The trust does not keep a central record of these arrangements therefore our answer was based on the recollection of the relevant senior member of staff,” one trust said.
Royal United Hospitals Bath NHS Foundation Trust said that The BMJ’s query had made it aware that it might not be in the know about some joint working arrangements within the trust. “As we have discovered from what the requestor sent through, before, when we said no, there might be arrangements which corporately we haven’t sight of,” a trust spokesman said.
The BMJ pointed out to the trust that details of a joint working agreement were listed on the website of the drug company AstraZeneca. But the trust said that none of the monetary agreements with the drug company were recorded in its finance systems. This means that it can be difficult for trusts themselves to know at an organisational level about the existence of such arrangements. The trust’s spokesman said, “The issue from the finance point of view is that we don’t necessarily know about these as we aren’t receiving any financial benefit from them directly in terms of being paid or getting discounts.” He said that the fact that details weren’t registered in the trust’s financial system or in a central register meant that the trust wouldn’t have been able to tell that any such joint working arrangements existed.
Benefits to patients
John Puntis, a consultant paediatrician and secretary of Keep Our NHS Public, says that information about joint working should be being made available to patients and the public. “There’s no reason for it not to be entirely transparent if it is supposed to be a win-win situation on both sides, and the NHS and patients benefit, and there are no strings attached in the sense that prescribing practice or clinical practice isn’t being distorted by the company,” he says. “There may be some positives—there’s no question about that. But how do you judge that unless you have access to the information?”
In terms of benefits, joint working arrangements are designed to generate positive outcomes for patients, the NHS, and the companies involved, yet patients’ groups are concerned about the lack of transparency (box 5). In many projects the benefits for companies are explicitly described as being “more use of medicines,” “improved access to innovative medicines,” or an “increase in access to innovative medicines.”
Patients’ perspectives
In 2016 and 2017 a total of 22 joint working projects focused on age-related macular degeneration or related conditions. Cathy Yelf, chief executive of the Macular Society, says that details of such arrangements should be publicly available.
“As in all public services, transparency is important, and we can see no reason for the NHS to be secretive about this work,” she says. “We understand from anecdotal examples that these industry partnerships have brought benefits to patients in at least some areas. But no such partnership with industry should influence the clinical decisions of doctors.”
Three joint working projects carried out in 2016 and 2017 involved reviewing the medication of people with attention-deficit/hyperactivity disorder. Sheila Keeling, chief executive of Addup, a support charity for families affected by ADHD, says she did not think that this was a good use of NHS money.
“I’m not averse to the drug companies putting money into this,” she says. “What I don’t like is the idea of the NHS putting money into this, because they don’t have any money.”
Keeling argued that NHS investment in ADHD services would be better spent elsewhere. “If they want to provide a better service for children, they need to go back and look back at their child and adolescent mental health services,” she says. “They need to be looking at what is not working.”
Six joint working projects carried out in 2016 and 2017 focused on tuberous sclerosis, a rare genetic illness affecting one in 20 000 people. Paula Davis, whose 19 year old son William has the condition, says it is important that information about projects such as these that have used NHS funding should be made available.
“It would be better if the community knew about them, particularly if it is NHS money,” she says. “Transparency is very important. If it’s public money it should be transparent. What would be the reason it isn’t?”
RETURN TO TEXTWhose interests?
Using information on drug company websites, The BMJ was able to examine the focus and approach of 93 projects running in 2016 and 2017. Of these, 73 involved reviewing patients’ treatment and prescribing additional or alternative drug treatment, if appropriate. These projects typically involved either developing patient registries or setting up treatment review clinics. In both cases the aim was to identify patients who might benefit from “relevant and most appropriate treatments” or “to improve access to innovative medicines and treatment.”
Many of the projects specifically referred to increasing the use of products marketed by the company funding the project. For instance, in one series of projects Bayer is a partner with Bradford Teaching Hospitals NHS Foundation Trust, Central Manchester University Hospital NHS Foundation Trust, Kingston Hospital NHS Foundation Trust, Taunton and Somerset Hospital NHS Foundation Trust, University Hospital NHS Foundation Trust, and Yeovil District Hospital NHS Foundation Trust. Bayer said that this project would improve “NICE-approved medicines optimisation of injectable therapies, of which Bayer’s aflibercept is one.”
Another project is “intended to create more opportunities for the appropriate use of ophthalmology licensed medicines, including Novartis medicines.”
In terms of determining the patient groups that should benefit from joint working arrangements, the health department, NHS, and ABPI suggest that ideas should come from NHS organisations. The toolkit on joint working developed by the health department, NHS, and ABPI describes the way in which NHS organisations should identify opportunities for joint working and put proposals to companies.3 The NHS and health department guidance on joint working is also clear about the need for joint development of projects across the NHS and industry.2
Some trusts say that they have approached companies to seek their involvement in joint working arrangements. Yet, in some cases companies have approached trusts to ask about involvement in projects or are involved in similar or identical projects with different NHS trusts. Of the projects The BMJ examined in detail a quarter (25 of 93) were the same as at least one other project in a different trust in 2016-17.
A Roche spokesman said that the company had used both approaches. “In some cases, we identify an opportunity to work with a trust, and on other occasions the trusts approach us,” he said. “Any decision for our involvement is based on identifying which project could have the greatest impact, being in an area where Roche has a high level of expertise.”
Birmingham LMC’s Morley says that the NHS should be taking the lead on determining the focus of projects to which it is committing investment. “NHS trusts should be prioritising the needs of their patients,” he says. “Yet it appears that these joint working arrangements are being designed first and foremost around the interests of pharmaceutical companies. The extent to which trusts appear to be increasingly willing to be led by the nose by drug companies to work on projects that will boost their profits rather than benefit their patients is of massive concern.”
Puntis argues that the lack of expertise in NHS organisations in negotiating contractual arrangements has meant that the health service is often left at a disadvantage when collaborating with the industry. “The NHS tends to get run rings around by the private sector when it comes to contracts and arrangements,” he says. “I think trusts probably invite pharmaceutical companies in without thinking about the broader consequences of what it might perhaps involve.”
In addition, the objectives of private drug companies differ fundamentally from those of NHS organisations, Puntis says. “It is not altruism; at the end of the day it’s profit,” he says. “My concern would always be, ‘What’s in it for the private sector?’ They never do these things purely for the benefit of the NHS and the benefit of patients. They’re often buying goodwill as well. Doctors say, ‘Well, we’re not influenced by the drug companies,’ but clearly they are, because otherwise the industry wouldn’t be pouring all the money into it.”
Acknowledgments
The BMJ thanks Piotr Ozieranski, a lecturer in the department of social and policy sciences at the University of Bath, Britta Katharina Matthes, a research associate at the department for health at the University of Bath, and Shai Mulinari, a researcher at the department of sociology at Lund University, Lund, Sweden, for their research.
Footnotes
Competing interests: None declared.