Data authority chair calls for pharma transparency
The chair of the UK’s national healthcare information provider says that government and industry have “a lot of work to do” to build public confidence in NHS patient data sharing.
Kingsley Manning who heads non-departmental public body the Health and Social Care Information Centre (HSCIC), believes that both entities can benefit significantly from the analysis and aggregation of individuals’ medical information.
“We have to ensure that [pharma] has access to data to support basic research, to ensure the efficacy and safety of drugs and to enable the industry to operate at the lowest cost to the health and social care system as a customer,” he suggests.
However, establishing data sharing as the norm requires the confidence of patients. “None of this will be possible unless we can sustain trust in the public – unless the public is prepared to continue to share its data with us,” Manning says.
Manning was speaking this week at a healthcare leadership event hosted by communications group OPEN Health, telling pharma executives in attendance that the ongoing data transparency debate is not doing their firms’ reputations any good.
“The sight of major senior clinicians having a public slanging match over clinical trials data is not edifying either for the public or the profession,” he says. “And it continues to undermine the belief in the trustworthiness of the trials process and of the pharma industry as a whole.”
He adds: “Equally, nor do questions about the business practices of some of the largest players in the industry help.”
When asked by Pharmafile what the industry can do to build confidence, Manning suggests: “We [the HSCIC] have to be more transparent and I think you [the pharma industry] do as well.
“For us it’s important to recognise that citizens have rights which are irritating and awkward but which we have to honour. We have to find ways that enable citizens to provide appropriate levels of dissent – of objections – and we have to enable them to have some understanding of what is done with their data.”
He continues: “I think the same applies to the pharma industry – if people are involved in clinical trials, do they know the outcome? Do they understand the benefit that is achieved? Do they feel valued as part of that process?”
The HSCIC was the body commissioned by NHS England to collect data for the troubled Care.data project. The initiative was designed to pool anonymised patient data with the aim of making health services more efficient.
Manning explains that a new Care.data trial run will begin in the autumn. If successful it could lead to a national roll-out at the end of the year or the beginning of 2015.
He suggests that the failure of the initiative to launch as planned was in part down to poor communication with the public. “One of the failures of the Care.data programme was we weren’t clear about what [patients] were getting out of it,” he says.
“You were going to be forced to give your record and it wasn’t clear what benefit it had for you, your family or the wider community. I think we have to have a much clearer statement of the transactional benefits that arise from this sharing.”