interviews

The gift of data

Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities (AMRC), speaks to NHE about the importance of sharing medical records for research.

NHS England has begun an awareness campaign explaining the changes in its care.data programme, which will see patient records shared more widely, both inside and outside the NHS.

Dovetailing with NHS England’s leaflet drop, a group of leading charities, including the Association of Medical Research Charities (AMRC), have launched their own campaign to help promote the research benefits of sharing patient records.

NHE spoke to chief executive Sharmila Nebhrajani about the importance of data, informed consent, and getting the right safeguards in place.

Supportive public

She pointed out that the members of the group all had highly active groups of supporters and donors, who were keen to make their data available for research. The NHS England campaign therefore “chimes very much with what the public tell us they want and with getting more and better research done”.

It’s not a new theme for medical research charities, she said, but they are seizing the opportunity to talk to the public about it.

Awareness around patient data and the plans to share records for research purposes can vary across the population; something which is important to improve, as “research needs data from the healthy as well as from the ill”.

Those already in patient groups, or with a relative suffering from a disease which would be improved by research, are already clearly committed to the cause. But there is still work to be done to spread this awareness further.Nebhrajani said promoting the importance of large datasets in research would be crucial to achieving this.

“The public are incredibly supportive of research. They certainly give their money, their time, and I think they’re willing to give their data. But they must do so knowing the ways in which it’s going to be used and by who. It’s really important that NHS England have that conversation up front.”

The right to opt out

She added: “People have the right to say no; to hear what charities say about research, consider what’s right for them, understand how their data will be used or not, understand its role in the research agenda and then can disagree with that and say they don’t want to participate. I think charities absolutely respect that.”

This involves making sure people really understand the consequences of their choice, and how researchers could make use of your data if they gave consent.

“Care, competence and consent” are the three things people should be informed about, Nebhrajani said, as medical data is very sensitive, and must be treated with respect and care. Patients must feel confident that researchers will be competent, that “mistakes won’t happen, leaks won’t occur, the information governance is good, the safeguards are right”.

An obvious caveat to this is to acknowledge that large IT systems tend to be “difficult, complex, mucky beasts”. Achieving 100% accuracy all of the time may be impossible. Ensuring patients understand this when choosing whether to make their data available for research is key to providing them with informed consent.

Despite the huge research benefit of access to this data, “no system, no matter how well-designed, will ever be 100% foolproof”.

But while there is a risk, GPs have been managing confidential patient data for decades. It’s about making this system work at a large scale, in a more automised way that is the real challenge.

Effective safeguards

Nebhrajani said: “It is the responsibility of NHS England to tell the story about what safeguards it will be putting in place; what patients and the public can count on them to do.

“The safeguards must exist, and people must feel that care and competence is being effectively exercised. Part of our campaign is reminding people that every decision in life is a balance of risk and benefit.”

When asked if NHS England is currently doing enough to provide this assurance, she said: “I think this is the beginning of a dialogue.
There is definitely more that NHS England could and should be doing. The fact that charities are having this campaign at all reflects the fact that we think there’s a research story to be told.”

The charities are “explicitly not commenting on the [individual] care side of this debate”, Nebhrajani added, which she said was a duty NHS England must consider – sharing data about patients in more effective ways to improve their own care, as opposed to the wider research purposes of care.data.

Private involvement

Getting this message across clearly certainly includes how people’s data could be used, and by whom. While allowing access to pharmaceutical companies may not sit well with the general sentiment for a ‘public NHS’, Nebhrajani pointed out that partnership working with the industry would be essential to develop new cures.

“No medicines are going to be made without industry involvement – industry is a very important partner in the research endeavour. It doesn’t seem to me to be unreasonable to say that industry – with proper safeguards – should also have access to that research data in their furtherance of their research objectives.”

While the majority of the public are likely to understand, or at least accept this, she warned: “It mustn’t be a surprise to them where their data may go.  [Consent] can’t be assumed.”

Step-change

The scale of the impact that sharing records could have on research can be paralleled to the evidence that linked smoking and lung cancer, kick-starting a huge and international public health campaign.

“That is the sort of step-change advance which will come with the use of this data.”

Linking large datasets in similar ways could “unlock” some of the enormous public health challenges currently facing society, highlighting the importance of patient information for preventative medicine as well as developing new cures.

“That’s the sort of advance we need to make very quickly in order to make our disease burden affordable”, she said.

As data becomes more and more complex, with the potential to develop stratified smart medicines, the need for patients to be
well-informed only increases.

Nebhrajani compared the act of sharing data  to donating blood or organs: “I genuinely think the donation of data by patients today is a gift in the same way that people donate blood and organs. It is of that value and it is of that personal sensitivity. It really is a gift.”

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