Mobilising citizen scientists to make their cities healthier

Non-communicable diseases account for 71% deaths globally and arise from physical inactivity, unhealthy food, and alcohol/tobacco use. Often health initiatives focus on individuals’ health behaviours despite ample evidence that environments heavily dictate ability to live healthily. And, these initiatives frequently overlook residents in decision-making.

CHESS® shifts decision-making to urban communities by engaging them as ‘citizen scientists’. CHESS includes a mobile tool that equips communities in mapping barriers they face when making diet, physical activity and healthy living choices, and then enacting changes to overcome these barriers. Emerging from research in three countries, CHESS has been piloted in eight London boroughs and five UK/US communities. CHESS evidence has helped communities raise over £2m from governments to implement changes.

Scaled globally, urban residents could use CHESS to make informed changes. Aggregated in an international dataset, it could guide researchers'/ policymakers’ decision-making to be truly representative of those most affected by NCDs. 

The problem is that in preventing non-communicable disease, urban residents are overlooked in helping determine the solutions.

Globally each year, 71% deaths are from non-communicable diseases. That’s 41 million people per year; 15 million of those people are young (30-69 years). We know why they’re dying – from alcohol, physical inactivity, unhealthy food and tobacco use – and that it could be prevented. These deaths’ burden is also clear: in addition to the personal toll on millions of families, it will cost the global economy an estimated $30 trillion by 2030.

Many health initiatives focus on changing individuals’ health behaviours. Yet, there’s ample evidence that a person’s environment heavily dictates their ability to choose healthy behaviours. Such as the disadvantaged community surrounded by fast food, or the millions of commuters driving to work because public transportation isn’t as accessible as their car. Health initiatives also frequently overlook the crucial step of asking residents what they want and need in order to live healthy lives. If urban residents aren’t involved in the decision-making process of how to make their communities healthier, the wrong interventions will be implemented and residents won’t find them impactful in improving their health.

We particularly focus on partnering with disadvantaged urban communities. Disadvantaged communities experience the most severe health disparities and the barriers that CHESS was designed to evaluate. These communities frequently have higher rates of tobacco and alcohol use, are more likely to be a “food desert” with little access to healthy food, have fewer public transportation options, and fewer maintained green spaces. They are also the communities who feel the most disenfranchised and forgotten by local government.

Through CHESS we have worked with young people, mothers with small children, and older people. For example, in 2015, Morgan Stanley commissioned us to assess three residential estates in east London for their project which aimed to promote young children’s health. Rather than give our views, we mobilised local mums, equipped with CHESS, so that they could assess the barriers and opportunities for healthier living. Based on the local community’s recommendations, the bank has since provided 14,000 healthy meals for children and transformed a disused carpark into a playground co-designed with parents. This project is illustrative of our CHESS process with all communities. From the project’s start to finish community members are determining what should be done to address their needs.

C3’s CHESS® is an evidence-based approach that shifts decision-making to local communities by engaging them as ‘citizen scientists’ in an investigation about how their built environment is affecting their health. CHESS includes a user-friendly mobile tool (app on Android tablet) that equips communities in mapping the daily barriers they face when making choices about diet, physical activity and healthy living. Emerging from research in India, China, and Mexico, CHESS has been implemented in eight London boroughs, two United Kingdom communities, and three US cities. To date CHESS evidence has helped these communities raise over £2m from local governments to implement changes.

This community-based investigation includes:

• Identifying and meeting with key local players (individuals and organisations).
• CHESS training and mapping. Community members walk their neighbourhood to record what they see in answer to questions posed by the Android tablet tool (e.g., are healthy foods available for purchase?).
• Aggregating the data and preparing it in a report for the community.
• Reviewing collectively, through insight sessions, the quantitative and qualitative data collected by community members.
• Using C3’s public health guidance, community members decide on an action plan of interventions to implement (ranging from small to big changes).
• Implementing interventions, including through grants (either through the C3 project or by using CHESS evidence to apply to other funders).

The strength of evidence collected by UK communities through CHESS and C3 has led to:

• Over £2 million awarded to communities from external funders to implement proposed solutions.
• 2 playgrounds co-designed with local parents, including transforming a disused carpark.
• 14,000 healthy meals for children provided by Morgan Stanley in east London, based on C3 and the community’s recommendations using CHESS.
• One-third of Girvan’s Glendoune population engaged (1,000 community members) resulting in the refurbishment and revitalisation of the community centre that was previously set to close.

In autumn 2018, IBM awarded a pro-bono consultancy to explore refining CHESS. A workshop included IBM, C3, key community health experts and residents from our recent CHESS project. Together we mapped out how best to refine the tool so that it can be brought to large-scale projects to reach even more communities. IBM believes that by developing this strategic ‘technology road map’ we will one day be able to:

• increase our existing scope;

• streamline CHESS through automation

• predict and measure results across multiple communities; and

• provide evidence to influence health policy.

CHESS began as research in China, India, and Mexico, studying built environments’ influence on health behaviours. The researchers decided to train locals as data collectors. Unexpectedly, the data collectors came back invigorated by the process. They shared that actively investigating their communities, rather than just the data itself, was a transformative learning opportunity about the subtle ways environments dictate health behaviours. The data collectors wanted to learn how to use this information for change. C3’s associate and CHESS creator perceived the great impact CHESS could have if adapted from academic research to the community-engagement process it is today.

Community members know their environments are unhealthy – they can give many examples, but they continually reference how much of an eye-opening process it is to systematically collect this data using CHESS’ simple technology (from an Ovenden, England participant: ‘Definitely an eye opener. Lack of things sold locally, how products are stocked to promote…’).

CHESS is also innovative for its granular data – data is available at regional / county levels but by community is rare. Yet these details are important when considering initiatives. Also, many community audits focus only on urban design principles. Ensuring that shops, restaurants, and green spaces are all within a 10-minute walk is important, but we must measure what happens when people reach those assets, their accessibility, and whether they are health-promoting places. CHESS is more than a data collection tool; it is a flexible, educational, engaging process that has been successfully tailored to multi-cultural contexts. 

Our CHESS process relies on a mobile application for Android tablet as the key technology underpinning the process. It was important for it to be technology that is very portable and simple so it’s user friendly for any urban community member to use – be it the elderly, parents, or teenagers - no matter their familiarity or comfort level with technology. In 2018, IBM created for us a “technology roadmap” showing how we could enhance CHESS so that big data was involved – by having a CHESS app available to communities around the world and usable by all smart phones and tablets, automating more of the processes, and having data aggregated and accessible in an international database. CHESS currently leverages indigenous knowledge by the questions being adapted and answered for and by local community members. We plan on translating the CHESS questions into different languages in the future iterations of the app.

Our theory of change is:

• Non-communicable diseases’ proven major risk factors are physical activity, tobacco, alcohol, poor diet.
• Many public health interventions focus on changing individuals’ health behaviours.
• From behaviour change theories, it is hard for people to sustainably change their behaviours when they experience significant barriers and when it requires changing their habits.
• Our built environments (where we live, learn, work, play) have been shown to influence 90% of the variation in a population’s health versus healthcare which only accounts for 10% (WHO 2008).
• People are often unaware of how environments influence their behaviours (e.g., marketing influences), and while they may have knowledge about healthy behaviours, they may not feel equipped to act on that knowledge.
• By using a simple tool that any urban community can use (CHESS doesn’t require fancy technology or very much technology know-how), community members can learn how their urban environments are influencing their health behaviours and collect systematic data based on evidence-based questions.
• By engaging in the educational process community members increase their knowledge of how the environment affects them and how to change their community to be more healthy.
• By collecting data community members have evidence they can take to policy makers/local governments to argue for change rather than relying on anecdotal evidence. Evidence of impact: CHESS has helped urban communities earn over £2 million to implement changes.
• By implementing community-created action plans that address issues discovered during CHESS, changes can be made that make the community more healthy.

We are currently partnering with different urban communities to apply for funding to implement CHESS as we recently completed other CHESS projects. To illustrate how many people we reach we will reference past projects:

• Bridgeport, CT, USA: 12 youth and 4 adults trained in CHESS, with the resulting CHESS activities (community gardens) impacting neighbourhoods of up to 1000 people.
• Brooklyn, NY, USA: trained 18 youth and 6 adults in CHESS, with resulting CHESS activities impacting neighbourhoods of up to 6000 residents (gardens, community rec center, bodegas).
• Bronx, NY, USA: 20 youth and 6 adults, impacting school of 520 youth (changed store products across street from a school) and neighbourhood of up to 5000 residents.
• Glendoune, Girvan, Scotland: 10 people trained in CHESS, and 1,000 community members (approximately one-third of the local population) engaged with the CHESS process in some way, and were affected by resulting interventions implemented.
• Ovenden, Halifax, England: we worked with 4 people, and ultimately 4,000 people engaged with the CHESS process in some way and were affected by the process and resulting action plans and interventions implemented.
• Tower Hamlets, London, England: 24 urban residents trained in CHESS, with 114 residents enrolled in the programme; impacting a neighbourhood with 3,500 residents.

We are currently applying for an EU project that proposes to work with communities in France & England in 2020. In five years we hope to impact hundreds of thousands of people through a CHESS lite app based on IBM’s recommendations. 

We have piloted CHESS in 8 London boroughs, 2 UK communities (one in England and one in Scotland) and 3 US cities. We have shown that CHESS is effective at: engaging community members; collecting evidence-based data about how the built environment is or is not health promoting; creating sustainable action plans generated by community members; and convincing funders to fund initiatives. IBM was so impressed with CHESS that they awarded C3 pro-bono consultancy to explore refining CHESS to bring to large-scale projects. The consultancy workshop included participants from IBM, the C3 team, community members who had used CHESS, and key community health experts. IBM believes that by developing this strategic ‘technology road map’ we will be able to:

• increase the scope of our existing community engagement work;

• streamline, through automation, the existing CHESS process;

• predict and measure results across multiple communities; and

• provide evidence to influence health policy.

“At the heart of IBM’s core values is a commitment to innovation that matters. We couldn’t hope for a better example of this than the work that C3 does and we are excited by the potential to scale and enhance their activities through the application of technology. It was a privilege to participate in the workshop and we are convinced that the inclusive, outcome-oriented approach that the team is taking will enable them to achieve great success whilst maintaining focus on their core objectives.” John Evans, Manager, IBM THINKSpace, Dublin

• Financial and technical barriers – IBM provided us with a very useful technology road map of how to refine CHESS to bring it to large-scale projects. Now we need money to implement their technological suggestions (e.g., coding, automating the technology behind it, creating the open-access database). CHESS projects also require funding per project to work with the communities and to implement interventions.
• Market barriers – getting the word out there about CHESS and encouraging people to start collecting the data needed to start building up the international database. 

• Financial and technical barriers – we are currently working with a fundraiser to identify potential funding sources to implement IBM’s technology roadmap. We have also taken the roadmap and parsed it into discrete pieces to see what we can start working on without funding through pro-bono or discounted labour.
• Market barrier – we have recruited an international advisory group that will provide insight into developing a lite version of the CHESS app (the one that we hope to have available globally to start building the international database). The group will help advise on developing the lite version questions as well as getting it known and used amongst their networks. We also continue promoting CHESS through national and international abstract submissions, presentations, and publications.   

Full-time staff: 1 (Director)

Part-time staff: 2 (Senior project manager; research & projects officer)

Contractors: 10 (Associates)

C3’s director, Christine Hancock, is a nurse and experienced manager. She was CEO in London’s NHS Waltham Forest; CEO of the UK’s Royal College of Nursing for 12 years; and was elected for a term as President of the International Council of Nursing. She has just been a keynote speaker at the biennial Congress of the International Council of Nurses in Singapore where she addressed 5,000 of the world’s nurses on preventing NCDs. Christine is frequently invited to present at prominent international conferences and to author pieces about NCD prevention.

Dr Denise Stevens, C3’s global health associate and CHESS creator, brings content expertise in evidence-based practices, research and evaluation work in NCD prevention and control. Most notably would be in the original design, piloting, implementation and evaluation of the Community Interventions for Health programme, the first and most comprehensive multinational pilot study to address NCDs taking a multidisciplinary approach that focused on the use of structural interventions in combination with community coalition building, health education and social media. Dr Stevens has also served as the evaluator on national initiatives for large philanthropic foundations on childhood obesity as well as farm to school programmes. She has a PhD in chronic disease epidemiology from Yale University School of Public Health where she has also taught for over 18 years.   

C3 is supported by a small core staff headquartered in London who manage day-to-day CHESS operations and work with community members. Associates provide their subject-matter expertise on projects as needed. 

• For our CHESS programme, we are currently partnering with IBM who helped us identify how to refine the tool by creating a technology road map. We have joined with 13 partners to apply for EU funding for a CHESS project in England and France; partners include Bournemouth University, Kent Community Health NHS Foundation Trust, Wellbeing People, Kent County Council, Health and Europe Centre.

• Beneficiaries: urban community members, particularly in disadvantaged communities and those with poor health indicators.
• Customers: local and national governments, businesses (e.g., for CSR projects), other non-profits, foundations/trusts/grant-giving organisations interested in public health and community engagement initiatives.
• Service we provide and how: CHESS® is a process that shifts decision-making to communities by engaging them as ‘citizen scientists’. CHESS includes a mobile tool that equips communities in mapping barriers they face when making diet, physical activity and healthy living choices. Community members use this data to create and implement changes guided by public health expertise.
• Channels: we reach our customers through word-of-mouth referrals, networking, presentations, and grant applications. We reach our users/beneficiaries through a combined bottom up and top down approach mapping out and meeting with key community stakeholders.
• Cost structure: our biggest expenditure areas are in staff time to lead communities through the CHESS process. This will change as we scale up and create a tool that is more automated and develop a version that could be implemented by communities without needing our staff heavily involved.
• Value proposition: CHESS has helped communities gather data to raise over £2 million in funding and implement evidence-based changes that make their community environments more healthy.
• Impact measures: C3 evaluates CHESS using:
  • A three-part impact survey, questions aimed at tracking changes in participants’ knowledge/behaviour. 
  • Observations and records of numbers of individuals participating in implemented interventions.
  • Qualitative data collection and analysis (e.g., participants’ feedback, local project manager reports).

As a non-profit we operate by a fee-for-service model. Our CHESS programme is part of our “business” and in order to run CHESS projects we must charge fees for our services. These fees are paid by our customers mentioned previously (e.g., by other non-profits, businesses, local governments). We also receive the majority of our funding by partnering with other organisations on grant applications for CHESS projects in specific locations. We are currently working on finding funding (either through a grant or corporate sponsorship) to refine the CHESS process/tool in line with IBM’s suggestions. We hope to create a version of CHESS – a lite version – that will be an app available to anyone. This app would generate money by having ads paid for by sponsors.

Future customers: once we have collected enough data to support AI activities we would potentially sell the data for revenue to local governments, businesses, academia. We would not take this step without local communities' permission, and would engage them in the process of determining if they would find this an acceptable use of the data, and only after careful evaluation of the ethical and legal considerations.

We are applying to Solve because:

• The funding would help us in overcoming the financial barriers we are experiencing to refining our CHESS tool technology so that it can be brought to large-scale projects;
• The connection to a community of peers, funders and experts to help advance our work would help us with our financial barrier, and also our technical and market barriers. As an organisation that prides itself on its global network of over 3,000 professionals, we appreciate the impact and importance that networks have and how sharing best practice and being exposed to new ideas can catalyse projects. Being part of Solve would allow us to network and partner with organisations we do not normally have access to.
• Receiving mentorship and strategic advice from MIT and Solve networks would greatly enhance CHESS as we refine and bring to large-scale; it would provide invaluable insight about how best to position ourselves to get CHESS out there; and it would undoubtedly provide ideas about how we could monetize different aspects of CHESS that we may not be aware of as a non-profit not used to focusing on monetization, and how best to position ourselves and our service. 

We would like to partner with organisations with technical expertise in app creation; expertise in big data – collecting, aggregating, storing etc. We would also like to partner with organisations interested in helping grow CHESS’ reach by implementing large-scale, multi-site (multi-cities, multi-countries) with their populations.