- Patient organisations are important examples of collective intelligence practiced in challenging conditions with the aim of tackling complex problems.
- With more long term conditions and multimorbidities, more data, more available options in diagnostics, treatments, and care, knowledge is becoming one of the most critical assets of patients seeking optimal care.
- Patient organisations, working as collectives, are in an excellent position to support the work of translating, assembling and analysing the information involved in healthcare.
- Innovative patient organisations are already supporting the development of peer relationships, driving ambitious research programmes, sharing skills and unlocking the energy and expertise of patients. But they need support from better tools to extend this critical work.
Unlike many popular examples of collective intelligence such as open source software, people coming to patient organisations are not motivated by pre-existing technical skills, but by urgent personal needs. This makes them a hugely productive site of research.
The ‘thinking challenges’ patients face are enormous and complex, involving an ever-growing store of medical information, the practical and bureaucratic skills of living with a condition. Many go beyond adherence to understanding and partaking in research.
The health care system is under strain from increasing demand and resource pressure. The NHS and other healthcare networks have committed to engage and empower patients and support them in developing expertise, enabling them to take a more active role in their own care. But knowledge tools and systems that engage only with individuals tend to exacerbate existing health care divides. Health knowledge work is hard, and requires time and resources.
In this report we argue that patient organisations have a pivotal role to play in distributing the burden and benefit of knowledge work amongst participants. They need new and better tools to support their work developing connections between the many individuals and institutions of the healthcare system, driving ambitious research programmes, and facilitating peer support.
Lydia Nicholas and Stefana Broadbent