Risk-Sharing, Patient Data, and Trust

Panellists left to right: Humza Yousaf – Cabinet Secretary for Health and Social Care, Sue Webber – Conservative Member of Scottish Parliament for the Lothian region, Tom Steele – Board Chair at Scottish Ambulance Service, Chris Carrigan – Expert Data Adviser to use MY data, Professor Dame Anna Dominiczak – Chief Scientist (Health) for the Scottish Government, Chair: Angela McFarlane – Vice President, Strategic Planning, North Europe at IQVIA

Innovating Healthcare Scotland gathered a panel of experts to discuss improving innovation in healthcare and life sciences. They offered perspectives on research, risk-sharing in product development, and building trust to increase use of patient data.

Panel chair and Vice President, Strategic Planning, Northern Europe at IQVIA, Angela McFarlane, continued the discussion on innovation in life sciences in Scotland.

This is the second of three articles we are publishing on this event, you can find the others here and here.

Porosity in Life Sciences

Professor Dame Anna Dominiczak, Chief S

cientist (Health) for the Scottish Government, started us off by talking about NHS Research Scotland (NRS) Innovation Fellows, colleagues from every speciality in life sciences. “The bigger theme that we’ve been discussing across both Scotland and internationally is so-called porosity. Porosity between the NHS, academia, and industry. This would be embedding people in training across from the NHS or clinical academia into industry and, another way.”

“Here I think it would be wonderful to have industry funding for these types of schemes, because I think it creates an understanding that cannot be gained from any other way in embedding in the system and having the ability to come back into your job and continue in a collaborative, cohesive coordinated way with industry without being afraid that this is another world.”

Further details were provided by an audience member appointed as one such fellow. “The important piece is that almost that chimeric function of understanding industry’s requirements as well as thinking about the NHS requirements are and being able to upscale those individuals to do those things.”

A Risk-Sharing NHS

Duncan Moore, Chairman of Lamellar Biomedical and the Scottish Biosciences Association, continued the discussion by asking: “How do we put in systems whereby the NHS can become a risk-sharing partner in the development of products?”

Tom Steele, Board Chair at Scottish Ambulance Service, agreed that working on this was crucial. Risk may be associated with it for both sides of the partnership, but if things go well, both parties can enjoy benefits. “We now have a central approach to Research & Development and innovation, with decision-making organisations which are on board, which Anna and I chair at the centre will start to enable that to come together in a way that we’ve never enabled to do so before,” Steele said of the progress made.

Humza Yousaf, Cabinet Secretary for Health and Social Care, pointed out that risk-sharing is difficult for the government, given the use of public money, which there is rightful scrutiny on. The potential failures on the road to success are difficult, so any risks taken must be calculated. However, he agreed: “If we share some of that risk, then the outcome for the public that we serve, and frankly for the NHS, that prize is a great one.”

Innovation With Patient Data

Next was Chris Carrigan, Expert Data Adviser, to use MY data. With over 30 years of experience working with the NHS in and around data, he praised that SHARE, an NRS registry, has 300,000 volunteers. But he expressed concern that many more haven’t signed up.

According to Carrigan, 97% of health data isn’t used for research. Unfortunately, most big data initiatives are unsuccessful. The reasons why such initiatives fail “are not technical,” Carrigan says. They fail because of a “lack of communication, engagement, and support from the people whose data we’re using.”

Carrigan explained: “use MY data is a patient movement, which was simply set up by groups of interested patients who wanted to reduce the difficulties in researchers getting access to data.” He also suggested how Scotland can increase innovation through patient data:

1. Let the people, population, and public know what happens with their data.
2. Get them more involved and get them more informed.
3. Make them advocates rather than treat them as a problem.

Increasing Trust

Gary White, Senior Director, Scottish Life Sciences Industry Leadership Group, asked: “How can public trust be built in the use of health data for research and innovation?”

“Say what you do and do what you say if you are using data say what it is that you are doing.” Carrigan then challenged the audience, “Try and figure out where your health data may have been used, and then try and figure out if it’s the case or not. Now this brings mistrust and worry, there are some basic things we can do, tell people what happens with their health data”. Thus, in doing this Carrigan stated that proper communication can enable the public to understand how and why their data is being used, thereby increasing trust.

This is not an impossible notion, given the example of the pandemic. Carrigan pointed out that the level of data collected and utilised during the pandemic was “ground breaking.” People understood what was being done, why, what we learnt from it and how it improved things. Therefore, the public trusted the system.

But trust requires communication, Carrigan continued, which demands taking ownership. “Whose job is it to talk to people about what happens with their health data? Is it the government’s? The opposition? Is it me? Is it the health professionals? It’s a really tricky one, because nobody really owns the problem.”

Yousaf agreed that communicating was difficult, but he made three key points about patient data and trust. He argued that everyone:

1. Has a better understanding of the use of data.
2. Should be proud of the ethical frameworks in place that enable confidence.
3. Could communicate, especially patients who have benefited from the system.

Future Benefits

Caroline Parkinson, Director of Creative, Edinburgh Future’s Institute, asked: “What future benefits do you envisage from harnessing the power of data and data-driven innovation in health and social care?”

Steele provided two examples from data analysis within the ambulance services. One was the increased presence of ambulances around retail centres, where incidents tend to occur. The other was the difference in the 999 calls from affluent versus deprived areas and prioritising accordingly.

Dominiczak said: “I see health data as gold for Scotland. And I think we need to mine data.” If we did so successfully for COVID-19, “why not for cancer, cardiovascular, metabolic diseases?”

Final Thoughts

Chamber UK’s expert panel offered several insightful perspectives on innovation through porosity, product development, and patient data.