7 Questions: Lydia Nicholas on collaborative innovation

pharmaphorum spoke to Lydia Nicholas about how Nesta is working with a broad mix of partners to improve people’s lives in a variety of sectors, including health and ageing.

Can you give us an overview of what Nesta does?

Nesta is an independent charity with a mission to help people and organisations realise great ideas. We support ideas that can help improve lives in the UK and beyond. This support comes in many forms, from early-stage investments to practical programmes, challenge prizes to in-depth research. We never work alone: as a researcher, funder and doer we are dedicated to collaboration and cross-pollination of ideas from a huge variety of partners.

Can you outline your areas of work?

Our current areas of work include citizen engagement in public services, digital arts and media, future thinking, government innovation, health and ageing, impact investment, innovation policy and new models for inclusive economic growth. These areas often intersect, so reports like The NHS in 2030 brought in members of our Health Lab, Technology Futures and Collective Intelligence teams to write about issues related to health, ageing, data, social inclusion, innovation policy, and so on.

The problem of antimicrobial resistance has been in the headlines in recent months. How is the Longitude Prize – that Nesta runs – addressing this problem?

Our overuse of antibiotics has pushed bacteria to evolve resistance, leading to the emergence of untreatable superbugs that threaten the basis of modern medicine. People are already dying in both the developed and developing world, and if the trend continues, many key aspects of healthcare, such as surgery and diagnostic procedures, will become much more dangerous.

The Longitude Prize is a £10 million prize for a team to create a cost-effective, accurate, rapid and easy-to-use test for bacterial infections that will allow health professionals worldwide to administer the right antibiotics at the right time. The test itself is one step on a much longer, more challenging journey towards a solution. We support education and awareness-raising as well as the key prize, and have worked with the BBC and National Maritime Museum, as well as other global partners. We also commissioned six writers to write science fictions about a future in which this challenge was not overcome, to help increase public awareness and understanding of antimicrobial resistance.

What do you think healthcare will be like in 2030?

Healthcare will be both more individualised and more connected to a much larger crowd. We will draw on the data of billions to make decisions tailored to each person. As this happens and we live longer with more long-term health problems, the complexity and cost of providing high-quality healthcare will increase. We will need to learn to take more responsibility for our own health, and the divisions between lifestyle choices, social activities, education and health will blur even further than they have already.

While this could be a very positive picture, we have to be careful about the growing healthcare divide. Already we know that people with higher incomes and more education use the healthcare system more and get more accurate diagnoses faster. As the responsibility for managing health information and longer-term healthcare falls more on individuals and their carers, people who have less spare resources will come under strain. We have a number of programmes which we hope will intervene here. Our Collective Intelligence team produced a report on Collective Intelligence in Patient Organisations, where we tried to highlight the important work already being done by charitable groups to help people with health problems share information, support and skills, and empower them to push their own research agendas. Similar work is happening in our Health Lab, where work on People-Powered Health has taken place with charitable and NHS partners for some time, and projects like Dementia Citizens intend to make this data-driven new world of healthcare more accessible.

What person, thing, or problem would you like to wish away?

I would love to wish away the complexities and inconsistencies in the bureaucracy of managing and exchanging health data. Being able to start afresh with a system that places the patient and their informed consent at the centre, with standardised systems in tests, in file formats, in error, so that information can move easily through the system to wherever it could be productive, would be extraordinary. At the moment protections can be misinterpreted to mean that patients cannot access their own medical records, while data cannot be easily exchanged between hospitals, let alone with research groups or open, patient-led platforms. This obviously leads to confusion and a breakdown of trust. Patients tell us that they can’t understand how they read that their information has been sold to private companies, yet a hospital a few miles from their GP has not received their test results from an appointment earlier that week and they have to go through an uncomfortable procedure all over again.

Conversely, what or who provides you with inspiration?

I admire groups who are working hard to build relationships across divides – who connect: patients with different levels of skill and experience in managing their conditions to one another; patients to doctors in new ways; doctors with different specialities to one another, or who draw from wider afield and connect different institutions. There are many positive examples in the field of rare disorders: the AKU Society, the Mark2Cure project, Genetic Alliance UK and the US’s Genetic Alliance.

What projects are you focusing on now?

We are looking for more case studies and partners who work in the field of helping people with health problems to help themselves – people who provide tools, who work with or within the NHS in connecting patients to one another, who run support groups themselves, or in other ways. We’d love to be contacted by groups who are interested in developing the collective intelligence of people living with health problems.

About the interviewee:

Lydia Nicholas is a senior researcher in Nesta’s Collective Intelligence team, exploring the new forms of knowledge production and problem solving that are emerging from the collaboration of networked publics, institutions and organisations. Before joining Nesta she worked as a researcher across technology sectors, with particular focus on medical and biological information. She has an MSc in Digital Anthropology from UCL, where her dissertation focused on lay understandings of personal data.

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