In the wealthier world connected and empowered communities are taking matters into their own hands. Educated since primary school about the importance of “healthy information diets” and environmental health, they have rejected a system that allows big corporations to freely manipulate their data for clicks, and for economic concerns to dominate the research agenda.
The voice of the people drives the setting of scientific priorities. Interest has shifted from finding cures for diseases historically prioritised by industry, towards research that can improve quality of life. There is increasing investment in research at the boundaries of health and social care, such as behavioural and environmental sciences, and enabling those suffering with debilitating conditions to live with a sense of belonging and of being a valued part of community and civic life.
Expiring patents, reverse engineering of drugs and reduced support from public agencies have reduced Big Pharma’s influence. Smaller biotech and pharmaceutical start-ups and venture philanthropists invest in investigator-driven studies, often with long research cycles. Universities partner with them and also with the crowd-funded labs that have evolved into well-funded entities.
Clinical research is a niche interest, given that the big chronic diseases have declined in most developed countries. Highly innovative and technology-driven studies solve circumscribed problems, benefiting relatively few people and driven by self-defined interests of patient and community networks, small charities, and start-ups. Funds come from small investors, public appeals based on emotional human interest stories and – when a study has longer term profit potential – from the biotech companies, venture philanthropists and university start-ups.
Population-based research focuses on social and ‘framily’ wellbeing and sustainable lifestyles. Data come mostly from ‘real-world’ sources, in particular from social networks and community apps that share personal stories and health information. Funding for such studies comes from crowdsourcing, selling patient data to trusted entities, and from food and fitness companies. This research is as likely to be done by citizen scientists and patients as by trained investigators. Use of primary care services has fallen dramatically, with informed patients receiving support from their communities in settings closer to home.
In less developed countries research is still driven by the need to survive in the face of poverty, instability, and climate change although international research communities get crowd-sourced funds and investment from venture philanthropists to evaluate and implement immunisation and other large scale disease prevention programmes. Engineers use their local and technology know-how to develop innovative health diagnosis and improvement tools, receiving crowd-sourced and charitable funds to implement widerscale adoption of their products.
“…the rise of the voice of the people in setting scientific priority … we may find that people are less interested in a cure for X and are more interested in things that are more nebulous … not clinical in the way that we define it”.
“The mistrust of experts may change very much the way in which we think about research and research prioritisation. There are some folks down in Hackney … using second-hand equipment from UCL and they get their reagents from proper universities, and they are either jobbing scientists or they were jobbing scientists, or they’re people who do other jobs that have a science background, and they are doing real experiments, and they are uploading their research”.
A key recommendation of the EU’s Directorate-General for Research and Innovation is to mobilise and involve citizens:
“… the future EU R&I programme should aim to become the biggest co-created and co-creation programme in the world. The EU R&I programme should provide incentives for stakeholders and end-users to participate more widely in its multi-annual programming, for example through identifying, debating and possibly even deciding which EU-level missions to choose…This could give rise to new types of partnerships… where “people” are working together with the public and private sector”.
The King’s Fund states that social media is already supporting new online communities of patient groups, and the impact of on health and social care can be expected to grow, particularly with increased transparency about services and outcomes. Furthermore, the data-driven social network, Patients Like Me, has conducted the largest number of crowdsourced health studies so far, and has over a million users with rare diseases.
Scroll down to view our three other scenarios or go back to the Future of Global Research overview.