By Jeni Tennison, Vice President and Chief Strategy Adviser at the Open Data Institute
Data and access to data is vital in tackling the big challenges we face as a society – from the earlier detection and treatment of disease to addressing pressing climate issues such as water scarcity and the reliance on fossil fuels. Alongside companies, academia and government, the social sector has a vital role to play in both stewarding and making use of data.
The Open Data Institute‘s vision is a world where data works for everyone. We work with a range of organisations, governments, public bodies and civil society to build an open, trustworthy data ecosystem. One of our programmes is currently exploring the role that Data institutions, organisations whose purpose involves stewarding data on behalf of others, often towards public, educational or charitable aims, have to play in this. And we have found that the social sector is the natural home for many of these institutions.
Data already supports decision making in the social sector. Researchers and funders use data to better understand the challenges civil society organisations face; 360Giving supports the open publication of data about grants to support effective funding. Data is also being used by nonprofits to prioritise their efforts; Citizens Advice monitors a range of data to identify trends around the support citizens need. In one of the programmes we run, OpenActive, we have seen how data can help people and communities find the support they need and better advocate for themselves.
As more people and organisations come to use data to inform their decisions, data has become part of the infrastructure that underpins our society, just as roads, electricity, and phone lines have. This data infrastructure includes data assets, such as datasets, identifiers and registers; the standards and technologies used to curate and provide access to them; the policies that define how to use and manage data; the organisations that steward these; and the communities who are affected by it.
Data institutions perform a vital role in shaping this data infrastructure. Data institutions already exist in many different sectors, regions and contexts. In health, UK Biobank stewards genetic data and samples from around half a million people and supports their use for research. In manufacturing, the Open Apparel Registry collates and makes available vital open data about the location and conditions of factories around the world.
At the ODI we are interested in how data institutions support well-governed data flows, which also means looking at how they are constituted and operated, and the challenges they face. One finding from our research is that data institutions are often third sector organisations. They tend to be set up with a public, or charitable purpose and work towards societal benefit. And, like other non-profits, they tend to be supported by philanthropic and public funding.
The social sector plainly has a big role in shaping our society’s data infrastructure. How is it doing?
Data institutions find it difficult to get the support they need
One challenge that data institutions face is, not surprisingly, around funding. Data institutions need to be sustainable so that they can be reliable suppliers of data infrastructure that their communities depend on. But finding the right revenue and business models can be difficult.
Early stage data institutions often rely on grant funding to get started, and many continue to rely on it as they develop. But they can find it difficult to make their case. Funders understandably want to see impact from the grants they provide, but data institutions – as suppliers of infrastructure that others then use – are often one or more steps removed from direct impact with traditional beneficiaries. This means it can be difficult for them to provide the kind of evidence that funders like to see.
Another challenge, common for many non-profits but particularly acute for those stewarding and supporting data infrastructure, is lumpy project funding. Short term, project specific grants make it hard for data institutions to plan for the future and reach sustainability in the long term. Providing core, long term funding can give organisations the freedom to make the best decisions for their beneficiaries.
For this to change, the social sector, and in particular funders, must recognise the public purpose of data stewardship, and the impact it can have towards their charitable objectives. Changing information flows – such as by making data more readily available – is one way of achieving systemic change. Data institutions like DemocracyClub, for example, increase democratic participation by providing essential data infrastructure around elections, including the locations of polling stations and information about election candidates. We need a strong narrative around the contribution of data institutions to the social sector and its wider aims.
Luckily, there are already some funders supporting data institutions in an effective way. The Wellcome Trust has funded UK Biobank for the past 16 years to move health research forward, and Sport England has funded the OpenActive initiative to promote healthy lifestyles and increased physical activity. The Esmée Fairbairn Foundation have supported 360 Giving and committed to providing core, long term grants to their grantees.
Some social sector data infrastructure is missing or inaccessible
One of the beneficiaries of good, strong data infrastructure should be the social sector itself. I talked above about the kinds of decisions made by funders, nonprofits and communities themselves that can be informed by data. Some of this data already exists, but there are also gaps in the data that’s available and how effectively it is being shared.
Sometimes new data collection will be needed to fill these gaps. The DEI data standard by 360giving and the Funders Collaborative Hub is a great example of new data collection taking place to explicitly fill a gap in the social sector’s data infrastructure. The standard enables nonprofits to better share data about diversity, equity and inclusion of their charitable work, alongside the internal makeup of the organisation and those making decisions.
But in many cases, organisations are already collecting and maintaining data about the work they do. They could help to provide more holistic support to the sector by sharing that data with the wider ecosystem. Macmillan Cancer Support, for example, is considering how they could share some of the data they collect with external organisations to improve the experiences of those in care. The stewardship or sharing of data by these large civil society organisations should fit within their charitable purposes by improving the effectiveness and reach of their work, and ultimately helping more people.
Funders could also consider their role as data institutions, especially as another means for providing support to their grantees. For example, funders in the health sector, such as the Guy’s & St Thomas’ Foundation and the Health Foundation, have access to data and data expertise that can help inform not only their own work and prioritisation, but the work of those they fund.
There is so much to be gained for the social sector by continuing to support and create data infrastructure which is focused on social good. We need strong social sector data institutions to improve the collection and sharing of data, and hence the decision making, effectiveness and reach of the charitable sector. And we need to ensure these organisations have what they need to succeed, particularly to achieve the level of financial sustainability that is necessary to support reliable infrastructure. Effective data stewardship in the social sector is no longer a nice-to-have, but an essential underpinning for creating change in the world.
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