Democratisation Accelerates Discovery
True patient-centricity remains an aspiration. We agree that patients still get a raw deal. And we know that despite some effort, the disconnect between how health systems and Pharma view ‘centricity’ versus those living with chronic health remains wide. Patient advocacy groups are under-utilised. Telehealth is being pushed as a catch-all model, and in the wrong context.
Patients have always been ahead of the curve. Many know the value of their data and are comfortable sharing, in what they feel is the right context. Savvy health tech companies – such as HealthUnlocked (Corrona), PatientsLikeMe, and PatientsKnowBest – have successfully harnessed the power of the direct collaboration model, also proving that patients are open to consenting access to Pharma and HCPs to secure anonymised data, for a fee.
Citizen science goes way beyond this.
In terms of disruption, the clue is in the title, ‘citizen’ – giving any willing individual with no scientific or medical background the opportunity to roll their sleeves up and get directly involved in a real-world study within Healthcare, biomedical research, genomics, or public health.
Already proven globally in ecological and environmental settings, citizen science could be the game changer that Healthcare needs, offering a way to overcome some of its biggest ongoing challenges.
It doesn’t in any way undermine existing structured and highly governed collaborations between universities, research institutions, hospitals, and Pharma. Rather, it’s positioned as a complementary route to accelerating the conversion of results into application – from the lab to the citizen and the community and then back to the lab for further work.
Note also that it’s not a form of clinical trial. Even if we woke up tomorrow and these were as fully digitised as possible, from the patient’s perspective one major drawback remains– the trial end point is pre-defined, and its findings aren’t shared or discussed openly.
Citizen science proves that passivity and placebos are out. Open data is in.
Translating Medicine with the Public
Population healthcare and personalised care are two sides of the same coin. Yet it still seems that Healthcare, Pharma, Academia, and Government are stabbing in the dark, with poor alignment.
Citizen science bridges each of these sectors. It offers a radical form of engagement, to work directly with people, not just patients. On offer is an open-dialogue and direct input into the research itself, as well as a voice in relation to research analysis and next steps action.
Unlike the traditional clinical trial or patient representative route, regardless of their level of involvement, the citizen can pinpoint direct action – either in the steps towards their own improvement, seeding a community-driven initiative, or the enhancement of research findings through their contribution. This freshness in approach also emphasises fun and experiential learning.
Once on-boarded, participants can fulfil different roles:
- Co-design a research project related to a health condition or local community need
- Support research teams to classify abstracts of research reviews data, or clinical imaging– to help train algorithms. UK-based Zooniverse is the largest citizen science platform, with which Cancer UK has partnered for its ‘Cell Slider’ project, using volunteers to analyse millions of images of cancer cells
- Contribute their own health data, but also sit within a work group, alongside the research team to identify appropriate survey questions, to co-design testing methods, and participate in the analysis and interpretation of findings.
It is the third element, voluntary data contribution, that offers the most proactive involvement and far-reaching impact, potentially taking research in new directions. These citizen roles in no way replace or conflict with the CRO, clinical research nurse, or data scientist, whose value remains intact.
From the Healthcare sector’s perspective this form of science is new and unprecedented ground, marking a real culture shift, and so it doesn’t yet sit well with everyone.
But the evidence is in, and there are many positives:
- The open invitation across the population extends outreach in size of participant base, diversity, and geography
- More people learn about the link between lifestyle and health, and how as a community they can take steps towards prevention
- The profile of a disease is raised among all participants – even those not receiving treatment for any condition. Rare diseases in particular can be highlighted
- The value of wearables, IoT, and smartphones takes on new meaning since this is all about distributed and participative learning. Several projects have engaged citizens to co-design an app to support their research study
- Everyone learns first-hand how and why data is being captured. The nuts and bolts of ML/AI can be showed – this offers a closed loop from diagnosis through to coping with a prescribed drug in the real world – trials don’t show this
- Published research findings are shared openly with all participants
- Researchers gain an earlier opportunity to screen research ideas pre-trial, or correct oversights, especially for rare diseases
- Through this more rapid self-reporting model, researchers access to data ordinarily difficult to capture
- Research findings are also shared openly among the wider academic community for peer review under a creative common licence, and to contribute towards their own clinical trials – this is slowly being accepted as a viable addition. The momentum building behind federated learning is impacting here, and can encourage researchers from diverse disciplines to work on a shared problem
- Academics can be reassured that governance, data security, and compliance are as tight as possible – to be at least on par with if not exceeding some elements of traditional trials
- Time constraints and cost both reduce significantly, while studies have revealed unexpected or significant discoveries, or the emergence of fresh data – which has gone on to facilitate enhanced clinical trials and drugs discovery.
Technology is the Glue for Citizen Science
The value proposition is strengthening. Below are some of the most established and more recent citizen science projects, with solid support from the enterprise and health tech sector:
- Deutsche Telekom/GLITCHERS with University College London and the Sea Hero Quest study: Gamification on a mobile device (a free downloadable app), followed by a VR version, were used by 4.5 million citizens across 13 countries, aged between 18-65 years old. Through a sea voyage of discovery, simple tasks testing spatial navigation capability – the first signs of dementia – were tested, to help scientists spot the signs of and provide an earlier diagnosis of dementia.
- The aggregated results showed – participants could opt to reveal their age, sex, and country – that while there are fundamental differences in the navigation strategies between men and women, this narrowed in countries with greater gender equality. Also, a country’s GDP also impacted on capability, with the Nordic countries among the highest performing alongside North America, Australia, and New Zealand.
- The study partners include the University of East Anglia and the Alzheimer’s Research Organization. Gaming specialist GLITCHERS has also worked with the Welcome Trust in the UK.
- Neotiv with the German Center for Neurodegenerative Diseases on Alzheimers: Neotiv has independently developed an app to identify the early signs of neurodegenerative diseases, to work towards a preventive model. In tandem with the Center, it’s collaborating with people living with Alzheimer’s and the elderly in general. Over a longer time period, they will participate in tests that monitor their cognitive health, but they also record other intermittent events such as whether they catch flu etc., to see if this has any impact.
- The tests are designed for use in any country, regardless of mother tongue language or a person’s language skills.
- The ultimate aim is to have this prescribed through the GP, so that diagnosis can be discussed in a safe setting. While citizen scientists volunteer their data, they aren’t offered a diagnosis.
- Biotech Lifebit with Harvard Medical School and the Personal Genomes Project (PGP): Launched in 2005 and now involving 5 cities (Boston, Toronto, London, Austria, and Shanghai), this remains a live project. Screened participants are not only fully aware of the implications and privacy concerns of making their data public on databases under open access, and therefore identifiable, but have to sit an entrance exam before signing consent.
- The data is freely accessible either on Lifebit’s CloudOS federated AI-powered platform, or the Cancer Genomics Cloud open-source platform hosted by Seven Bridges Genomics. Such has been the success that UCL, which manages the London hub, has developed a complementary app.
- The UK Institute of Mental Health and the C-STACS study: Aresearch partnership between the University of Nottingham and Nottinghamshire Healthcare NHS Foundation Trust. The Institute has teamed up with a consortium,includingorganisations led by mental health service users, to sign up volunteers. Running from 2021 to 2023 this is a first-in-field study which through feedback and co-design from service users, informal carers, and professionals, will aim to shape how a recovery from mental health programme could be offered, to include self-management skills and tools.
- Technology-wise, the Zooniverse Project Builder from the Citizen Science Alliance (available in 3 mother tongue languages) will be used to create and pilot-test the project, and get direct citizen input. The follow-on project will co-develop and rate self-management approaches. This is being funded by UK Research and Innovation (UKRI).
- Multiple TMT players and The Folding@home project: In 2020, Washington University in St. Louis School of Medicine launched its COVID-19 Moonshot, a distributed computing project. It recruited ~4 million citizen scientists globally. Donating the unused computing power for their own PCs, they ran simulations of disease proteins (to understand how they ‘fold’), and sent the results back to central servers. This helped to identify the best protein candidates for vaccines.
- Several global TMTs have proactively donated technology and skills as partners: GitHub, Intel (CPUs), Microsoft Azure, NVIDIA, Pure Storage (flash blade technologies), Telefónica (CPUs), and VMWare.
- The Vodafone Foundation and The Corona-AI study: Launched in 2020 and ongoing, Imperial College signed up some 100,000 volunteers to donate the processing power of their smart phones overnight, to support its AI project. The aim is to both ringfence everyday foods with the right kind of antiviral properties to fight COVID, as well as identify licenced drugs that could potentially be repurposed against COVID. The findings are helping to design a support at-home model for people who’ve already contracted the virus, using a blend of drugs and precision nutrition strategies.
- Vodafone Foundation UK developed both the ‘DreamLab’ app and platform to underpin the work – Vodafone customers may incur small charges in some contexts such as WiFi use and roaming, while non-customers will be charged for the data they contribute each month, based on their mobile phone or home broadband plan. Results from the first phase, expected to complete by end-2021, will be shared with the wider research community, for use in trials. Subsequent phases are planned.
- ZOE Ltd with King’s College London and the COVID-19 Tracker Study: Positioned as the world’s biggest citizen science health project dedicated to COVID, with over 4 million registered participants. King’s College London spin-out Zoe (also the developer of a commercialised home kit for personalised nutrition) co-developed an app for people to register their symptoms during the pandemic – whether or not they had the virus – alongside their approximate geographic location. The anonymized data was then shared with a team of epidemiologists at King’s and the NHS. This resulted in a live heat map, identifying the areas with the highest prevalence of COVID. Citizen contributions are also attributed as having identified definite symptoms, such as loss of taste and smell.
- ZOE differentiates its app and mapping as superior to many others out there, including Facebook and Google.
- Its research partners include Harvard University, Stanford University, Massachusetts General Hospital, Tufts University, Berkeley University, Nottingham University, University of Trento, and Lundt University, who may have access to this data at a later stage – privacy policies outside GDPR are openly shared with ZOE’s participants.
Added to these examples are AWS, IBM, Intel, and SAP, which have previously supported citizen research studies dedicated to environmental contexts.
The Platform Economy Beckons
How this model evolves depends on the range of partners it attracts. Recent success has whetted the appetite within pockets of the medical research community.
While governments aren’t rushing to sign up, the societal and economic gains from engaging meaningly with citizens on issues relating to self-managed care, population health, and smart healthy cities isn’t lost. One encouraging exception is the work of Cochrane – see my profile below – which enjoys a solid reputation among many governments, who consistently fund its (niche) work.
And the platform would seem a natural model to apply, to support the blend of rigour and elasticity needed to succeed. There are blueprints of sorts to consider through these leaders, but your own partnerships could drive other innovative approaches:
- Zooniverse: Claims to be the world’s largest general citizen science platform, with over 2 million registered volunteers, supporting a variety of scientific disciplines, including human biology. It runs on Microsoft Azure.
- World Community Grid: Run and supported by leading clinical research Krembil Research Institute, in Toronto. It’s also part of the University Health Network, North America’s largest hospital research network. Up until September 2021, the Grid was powered by IBM.
- Cochrane: The UK-based global independent network of researchers, professionals, patients, and carers. Major funders include the UK’s National Institute for Health Research (NIHR), the Danish Government (Rigshospitalet Research Committee), the German Federal Ministry of Health, the US National Institutes of Health – its members span from 220 countries and funding reflects this. Individual NHS trusts and charities also fund.
- Its Community reviews descriptions of research studies relating to randomized controlled trials, to identify and classify them. These feed into Cochrane’s Central Register, accessed by authors and other systematic reviewers globally, as a quick reference on existing evidence for successful treatment, or diagnostic tests. The platform is powered by Microsoft.
Options for the Tech Community
Monetization has not yet been fully addressed, and it is sensitive. The ’Folding@Home’ project was a response to COVID, with the contributions from the tech community a Corporate Social Responsibility initiative.
But, given the work underway across Pharma to bridge with other Healthcare stakeholders to get closer to citizens and patients, commercial routes will emerge in some form. Australia, France, the EU, and the US each has an established Citizen Science Association, so explore options here.
Those of you working with biotechs and research teams linked to University Hospitals have a good launch pad, given their broad aligned networks. As I’ve outlined in other posts, the federated AI model is attracting providers, happy to pass the heavy lifting of AI over to a better qualified partner(s).
This is all about data as the gift that keeps on giving. Several of those projects highlighted above will, with consent, repurpose their existing data to further other work. Areas that have been earmarked for investigation include rehabilitation, cancer, antibiotic resistance, and the whole social care domain.
For example, participants from the ZOE COVID study who have opted-in to share their data with wider health studies know they’ll be contributing to work dedicated to other infectious diseases, dementia, cancer, and cardiovascular disease.
Telcos in particular can carve out a footprint here, in either an analytical or hardware context. There is scope to not only help visualise the contexts in which data can be gathered using sensors and IoT, but also in the design of data collection tools and interfaces, including chat bots.
Citizen science positions as a champion of diversity and inclusion, but we know that access to technology remains a significant barrier to this goal.
Existing work from Vodafone, alongside the output from the newly announced assisted technology design partnership between DXC and Lenovo are worth monitoring.