Managing the commercialisation of patient data 

Last week, I interviewed Klaus Boehncke, Digital Health Lead for L.E.K. Consulting and his Healthcare Partner colleague Guillaume Duparc, all about what makes a successful investment in AI, overcoming shortfalls, and why 2025 is a defining year for the technology. 

As an offshoot of the conversation, Boehncke raised the interesting point that they are seeing a lot more projects focusing on the commercial value of data. In the past few years, with many providers making investments into Electronic Medical Records (EMR) and digital engagement with patients, this has led to them sitting on a lot of data. 

“They’re now asking the questions, ‘is this data valuable? Would somebody pay for this data?’,” he explained, assuming they have patient consent, have suitably anonymised data, or have built synthetic data they want to sell. 

Boehncke emphasised this is really important for AI because if you have no data you can’t train it and, unsurprisingly, this means it won’t be of quality. Meanwhile, you also need data for a lot of pharmaceutical research.  

“I think the data story will become more and more important as more companies will be looking to see if they can commercialise their data, enter into joint venture agreements or potentially co-invest into AI companies that can then leverage their data and be trained on their data,” he said.

“That’s something that we’re certainly seeing globally.” 

Boehncke said that data was something we could talk about for another hour if we had the time — sadly we didn’t, as the interview was focussed on another topic. This question of the increasing importance of data, and the ethical and privacy concerns around health data, does make for interesting food for thought.

A previous Wellcome Trust report, based on major UK research from Ipsos MORI, found a slight majority (53%) of people would be happy for their health data to be used by commercial organisations if it was for research.

More than 60% would rather commercial research organisations have access to health data than society miss out on the benefits these companies could potentially create. Academic researchers, charities, and organisations working in partnership with the public sector were considered the most acceptable users of health data. 

Overall, most of those polled were extremely wary of insurance and marketing companies using anonymised health data, which were perceived to be acting against the interests of individuals. Safeguards and regulation were found to reassure people but there was no single one that increased acceptability for everyone.

Prevention of third-party access to data was cited by 53% of those surveyed as an essential condition for allowing commercial access to health data. 

A minority, although a notable minority, of people (17%) objected to private companies having access to health data under any circumstances. However, the report also found that communication is key, with the report stating that “The research also showed that the more informed people were, the more likely they were to approve of their health data being used for other purposes, including by commercial companies”. Disclosure and transparency seem key to securing buy-in from patients.

This sentiment is echoed by Boehncke, who told us that patient consent for data is actually relatively easy to get, particularly for difficult to treat diseases including cancer or heart disease. “I think you just need to be open and transparent with patients to avoid any backlash,” he said. 

Perhaps it's already time for another interview…