Second, we need to create open-source structures that allow national and sub-national level health systems to collect and share this precious data in a timely, privacy-preserving manner. Fragile health systems around the world have already been overwhelmed with the tsunami of demand that has arisen from the spread of COVID-19. Everyone racing to create their own solutions to problems negates the need for speed we have in this pandemic. An epidemic somewhere has the potential to become a pandemic everywhere. We need to share tools – both hardware and software – openly and understand that short term gains in one area of the world are meaningless if not shared with other areas that are battling this virus.

We propose forming a data collective: a conscious, coordinated effort by a group of organisations with expertise in gathering and using data in the charity sector. We want to make sure that people in charities, on the front line and in leadership positions have access to the information they need, in a timely fashion, in the easiest possible format to understand, with the clearest possible analysis of what it means for them.

Successful organizations require financial systems, information technology, volunteer management and sustainable revenue streams. Part of the myth of the nonprofit world is that somehow righteousness will ultimately triumph over limited planning, crappy systems and a general scarcity of resources. But that is not the way the world works.

Our effort, known as Building Institutions and Networks, or Build, provides long-term, flexible funding and a deep sense of partnership with grantees, which leads to impressive outcomes for social-change organizations around the world. More than 80 percent of Build grantees report that because of Build support, their work is more effective, their networks and fields are stronger, and they have been better able to take advantage of strategic opportunities and counter external threats.

Flexible funding requires foundations to be flexible in their own grant-making strategies — and to listen deeply to their nonprofit partners in developing strategy in the first place.

For grant makers willing to take the leap, many funding colleagues can show you the way. The Trust-Based Philanthropy Project, Grantmakers for Effective Organizations, the Full Cost Project, and many others offer tools and resources for funders on how to make larger, longer, more flexible grants.

To meaningfully support the nonprofit sector at this time, she argues that funders must transform their practices to be more flexible and less bureaucratic. She also says that they should offer unrestricted and easy access to grant money and provide long-term support.

Free and public code grew in direct response to the perceived failings of expensive, proprietary commercial software. As a result, the heart of the problem with digital infrastructure is also part of what makes it so rich with potential: It is not centralized. There is no one person or entity deciding what’s needed and what’s not. There is also no one overseeing how digital infrastructure is implemented. And because the community of volunteers developing this infrastructure has a complicated relationship with what might be seen as a more traditional, or official, way of doing things, few digital infrastructure projects have a clear business model or source of revenue. Even projects that have grown to be used by millions of people tend to lack a cohesive structure and plan for sustaining the technology’s long-term development.

We need to start by educating people who are in positions to provide support. Many of them—from start-up engineers to government officials—don’t know enough about how digital infrastructure functions and what it requires, or are under the perception that public software doesn’t need support.

The report, which the authors are aiming at European Commission lawmakers as they ponder how to shape an effective platform governance framework, proposes mandatory data sharing frameworks with an independent EU-institution acting as an intermediary between disclosing corporations and data recipients.

“Such an institution would maintain relevant access infrastructures including virtual secure operating environments, public databases, websites and forums. It would also play an important role in verifying and pre-processing corporate data in order to ensure it is suitable for disclosure,” they write in a report summary.

A market research purpose might only get access to very high level data, he suggests. Whereas medical research by academic institutions could be given more granular access — subject, of course, to strict requirements (such as a research plan, ethical board review approval and so on).

it enables people to contribute data about them to it and, on a case-by-case basis, people can choose to permit third parties to access that data. This is the pattern that many personal data stores and personal data management systems adopt in holding data and enabling users to unlock new apps and services that can plug into it. Health Bank enables people to upload their medical records and other information like wearable readings and scans to share with doctors or ‘loved ones’ to help manage their care; Japan’s accredited information banks might undertake a similar role. Other examples — such as Savvy and Datacoup — seem to be focused on sharing data with market research companies willing to offer a form of payment. Some digital identity services may also conform to this pattern.

it enables people to contribute data about them to it and, on a case-by-case basis, people can choose whether that data is shared with third parties as part of aggregate datasets. OpenHumans is an example that enables communities of people to share data for group studies and other activities. Owners of a MIDATA account can “actively contribute to medical research and clinical studies by granting selective access to their personal data”. The approach put forward by the European DECODE project would seem to support this type of individual buy-in to collective data sharing, in that case with a civic purpose. The concept of data unions advocated by Streamr seeks to create financial value for individuals by creating aggregate collections of data in this way. Although Salus Coop asks its users to “share and govern [their] data together.. to put it at the service of collective return”, it looks as though individuals can choose which uses to put it to.

it enables people to contribute data about them to it and decisions about what third parties can access aggregate datasets are taken collectively. As an example, The Good Data seeks to sell browsing data generated by its users “entirely on their members’ terms… [where] any member can participate in deciding these rules”. The members of the Holland Health Data Cooperative would similarly appear to “determine what happens to their data” collectively, as would drivers and other workers who contribute data about them to Workers Info Exchange.