One of the goals for any future health system is to ensure that the best available knowledge reaches decision makers in real time. This applies whether decision-makers are doctors, nurses, patients or policymakers, and whether knowledge is medical, clinical, social, or statistical. The key question is how this knowledge should best be organised – to ensure the right flow of knowledge, to orchestrate in the most effective ways, and to make it accessible.
Accessing relevant, accurate and up-to-date information is a critical prerequisite for anyone making a choice about their health. Patients trying to navigate a complex health system need to have access to information on a wide diversity of conditions and treatments, with the means to interpret different degrees of certainty and standards of evidence. Clinicians providing healthcare need to be confident in their knowledge in an increasing variety of areas in order to meet changing needs. If patients, families and peer groups are to become more active 'co-producers' of healthcare - shaping and managing their own health and treatment - they need to feel engaged and informed.
Yet knowledge about what constitutes safe, effective and efficient healthcare is constantly evolving. The internet has made information much more widely accessible (if not easily interpreted). The body of medical knowledge is now so vast and growing so quickly, that it is humanly impossible for unaided healthcare professionals to deliver patient care with the efficacy, consistency and safety that the full range of current knowledge could support. PubMed, the online database of medical research, has 21 million articles, with 500,000 being added every year (a doubling time of 19 years). As demands on the health system are more associated with long-term conditions, so our ability to make informed choices about our own and each other's health is growing increasingly important.
This is not a new challenge. There have been a number of attempts to coordinate health information more effectively, and many advocates for better orchestration of knowledge. However, recent innovations in information technology and our ability to mobilise our collective intelligence through better platforms and processes for collaboration hold huge potential for orchestrating knowledge in health in a much more dynamic, open, accessible and reliable way.
The shift towards a culture of openness and transparency of information, advances in our ability to analyse big data and interpret complex information, to collaborate to solve problems and make new discoveries brings new opportunities in how we structure and access knowledge. This is beginning to change how we think about the knowledge system in health, from advances in clinical research methodologies and open science, the prospect of open patient records, and an integrated record system, and the development of new tools and technologies for people to record their own data and provide decision support.
What does this mean for how we interpret information in health? Often used as an exemplum for other areas of social policy, the generation and use of evidence in the NHS is relatively sophisticated. However, there are still challenges in how evidence is accessed and interpreted at a practitioner level and by patients. How could a health knowledge commons provide a richer picture of the range and variations in evidence and allow more confidence in making decisions?
How could a knowledge commons improve our means of coproducing decisions? Meaningful relationships between patients and clinicians are only viable if patients are informed and engaged about their own health choices. And if clinicians had access to structured data about a patients' whole life (such as their aspirations and personalised needs) could this support shared decisions?
This week, Nesta is kicking off a new project to address the need for a health knowledge commons, and the potential offered by technology and data trends to realise this. This builds on work we have been doing over the summer with the Institute for Digital Healthcare at Warwick University and the Young Foundation, and a session Louise Marston and I ran at the O'Reilly Strata big data conference to look at the potential and challenge of healthcare data in enabling innovation.
We know that this work builds on the efforts of many others, and that our work needs to build on this and develop an alliance of support for a more effective health knowledge system.