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Ben Snaith

Sharing tools and data globally will help us beat COVID-19 | World Economic Forum - 0 views

  • 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.
Ben Snaith

Privacy not a blocker for 'meaningful' research access to platform data, says report | ... - 0 views

  • 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).
Ben Snaith

Every day, we rely on digital infrastructure built by volunteers. What happens when it ... - 0 views

  • 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.
Ben Snaith

Patterns of data institution that support people to steward data themselves, or become ... - 0 views

  • 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.
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  • it enables people to contribute data about them and defer authority to it to decide who can access the data. A high-profile proposal of this pattern comes in the form of ‘bottom-up data trusts’ — Mozilla Fellow Anouk Ruhaak has described scenarios where multiple people “hand over their data assets or data rights to a trustee”. Some personal data stores and personal information management systems will also operate under this kind of delegated authority within particular parameters or settings.
  • people entrust it to mediate their relationships with services that collect data about them. This is more related to decisions about data collection rather than decisions about access to existing data, but involves the stewardship of data nonetheless. For example, Tom Steinberg has described a scenario whereby “you would nominate a Personal Data Representative to make choices for you about which apps can do what with your data.. [it] could be a big internet company, it could be a church, it could be a trade union, or it could be a dedicated rights group like the Electronic Frontier Foundation”. Companies like Disconnect.Me and Jumbo are newer examples of this type of approach in practice.
  • it enables people to collect or create new data. Again, this pattern describes the collection rather than the re-use of existing data. For example, OpenBenches enables volunteers to contribute information about memorial benches, and OpenStreetMap does similar at much larger scale to collaboratively create and maintain a free map of the world. The ODI has published research into well-known collaboratively maintained datasets, including Wikidata, Wikipedia and MusicBrainz, and a library of related design patterns. I’ve included this pattern here as to me it represents a way for people to be directly involved in the stewardship of data, personal or not.
  • it collects data in providing a service to users and, on a case-by-case basis, users can share that data directly with third parties. This pattern enables users to unlock new services by sharing data about them (such as via Open Banking and other initiatives labelled as ‘data portability’), or to donate data for broader notions of good (such as Strava’s settings that enable its users to contribute data about them to aggregate datasets shared with cities for planning). I like IF’s catalogue of approaches for enabling people to permit access to data in this way, and its work to show how services can design for the fact that data is often about multiple people.
  • it collects data by providing a service to users and shares that data directly with third parties as provisioned for in its Terms and Conditions. This typically happens when we agree to Ts&Cs that allow data about us to be shared with third parties of an organisation’s choice, such as for advertising, and so might be considered a ‘dark’ pattern. However, some data collectors are beginning to do this for more public, educational or charitable purposes — such as Uber’s sharing of aggregations of data with cities via the SharedStreets initiative. Although the only real involvement we have here in stewarding data is in choosing to use the service, might we not begin to choose between services, in part, based on how well they act as data institutions?
  • I echo the point that Nesta recently made in their paper on ‘citizen-led data governance’, that “while it can be useful to assign labels to different approaches, in reality no clear-cut boundary exists between each of the models, and many of the models may overlap”
Ben Snaith

Why we're calling for a data collective - The Catalyst - 0 views

  • 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.
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    "Social Economy Data Lab"
Ben Snaith

Actually, nonprofits don't spend enough money on overhead - Quartz - 0 views

  • 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.
Ben Snaith

How the Coronavirus Crisis May Upend Grant Making for Good - The Chronicle of Philanthropy - 0 views

  • 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.
Ben Snaith

Flexibility for Grantees Is Not Enough. Let Them Decide Where the Money Goes (Letter to... - 0 views

  • 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.
jeni10

UK Research and Development Roadmap - GOV.UK - 0 views

  • Another underutilised lever is procurement, in which government and public service providers can act as an early adopter and first customer for new technologies and ways of working.
  • Build on our innovation enabling infrastructure Innovation happens throughout the UK, but access to the right support and facilities is not consistently available. Wherever we have high-quality R&D infrastructure we need to take full advantage of this, by encouraging the creation of new innovation zones and clusters of innovative firms around existing infrastructure around the UK. We will consider the full range of levers in doing so, from direct funding, to business support, to government’s ability to convene different actors and promote new opportunities. We want to build on our Catapult Network’s existing performance, boosting the benefits the network brings to local economies and addressing major challenges such as net zero carbon emissions. We will review whether they should all continue in their current form, exploring the potential to seize new opportunities. We will consider the opportunities provided by PSREs and other publicly funded research institutes, including establishing how government can best drive innovation through these organisations, for example through proof of concept for innovations and better sharing of ideas. To support publicly funded research infrastructures to make the most of their innovations, we will establish a fund to invest in innovative public sector ideas and a new unit to scout for and develop these opportunities.
  • Taking forward our National Data Strategy, we will improve the access to trusted data resources at local and regional levels to improve the availability of evidence at those levels to give local leaders what they need to build robust R&D ecosystems.
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  • Data that could drive new discoveries or innovation is not always as available as it could be.
  • make the most of PSREs, which have the potential to deliver broad public policy objectives and help innovation translation enable work across institutions to solve the grand challenges of our time make the most of our institutions, to use research to improve both UK and devolved policy outcomes and to measure and refine programme performance
  • Crucially, we must embrace the potential of open research practices. First, we will require that research outputs funded by the UK government are freely available to the taxpayer who funds research. Such open publication will also ensure that UK research is cited and built on all over the world. We will mandate open publication and strongly incentivise open data sharing where appropriate, so that reproducibility is enabled, and knowledge is shared and spread collaboratively. Second, we will ensure that more modern research outputs are recognised and rewarded. For example, we will ensure that digital software and datasets are properly recognised as research outputs, so that we can minimise efforts spent translating digital outputs into more traditional formats. Third, we will consider the case for new infrastructure to enable more effective sharing of knowledge between researchers and with industry to accelerate open innovation where possible.
  • PSREs and other publicly funded research institutes Public sector research establishments (PSREs) and other publicly funded institutes – including UKRI-funded institutes and institutes funded by the devolved administrations, are a diverse collection of bodies carrying out research. This research supports government objectives, including informing policy-making, statutory and regulatory functions and providing a national strategic resource in key areas of research. They can also provide emergency response services. They interact with businesses around a wide array of innovation-related functions. We want to get the most value out of the whole range of PSREs and publicly funded institutes, laboratories and campuses. The current PSRE and institute landscape is complex. There is an opportunity to raise awareness and support development of strategic national laboratory capability, develop closer relationships across the network of PSREs and institutes to address cross-cutting priorities and develop more consistent and co-ordinated, accessible funding for PSREs. Most programmes do not include funding for the full costs of overheads – this sometimes prevents our national laboratories from participating in UK government priority programmes without making a loss. A more flexible approach and funding a higher proportion of the economic costs would increase spending efficiency and encourage more effective investments and maximise their benefits. Building on the 2019 Science Capability Review, we will: champion the development of a truly strategic, national laboratory capability and identify opportunities to strengthen their capabilities and ability to collaborate, especially with the private sector, devolved administrations and local civic authorities work to understand current capacity and capability, including spare capability, and to ensure that national labs, PSREs and other publicly funded institutes are working together as part of business as usual rather than only in times of crisis explore the potential for all PSREs to have access to more funding opportunities from UKRI so that PSREs are viewed as national assets rather than the property of UK government departments
fionntan

Declaration of Conformity - Work equipment and machinery - 0 views

  • The precise requirements are specified in each relevant directive, but essentially Declarations of Conformity should include the following: business name and full address of the manufacturer and, where appropriate, his authorised representative; for machinery, the name and address of the person authorised to compile the technical file, who must be established in the Community; description and identification of the product, which may including information on model, type, and serial number a declaration as to which Directive(s) the product fulfils all relevant provisions where appropriate, a reference to the harmonised standards used, and to which conformity is declared where appropriate, the name, address and identification number of the notified body which carried out conformity assessment the identity and signature of the person empowered to draw up the declaration on behalf of the manufacturer or his authorised representative
  • When must a Declaration of Conformity be provided? For most new products the Declaration of Conformity must accompany the product through the supply chain to the end user.
  • This document should declare key information, including: the name and address of the organisation taking responsibility for the product a description of the product list which product safety Directives it complies with may include details of relevant standards used and be dated, and signed by a representative of the organisation placing it on the EU/EEA market.
Sonia Duarte

Clinical Service Accreditation - HQIP - 0 views

  • CSA provides this quality improvement framework in three main ways: by supporting clinical services to develop new accreditation schemes by supporting existing clinical services accreditation schemes to attain professionally-led standards by demonstrating the impact of accreditation in achieving high quality clinical services
  • HQIP (on behalf of the Clinical Service Accreditation Sponsor Gorup), BSI and the United Kingdom Accreditation Service (UKAS) share a common purpose in improving the quality of healthcare services through standards and accreditation.
  • These resources provide professional bodies, CEOs, managers and clinical leaders with a framework for setting up and managing clinical accreditation schemes.
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  • Development of standards for clinical service accreditation schemes Sharing and improving accreditation methodologies How to map clinical services into groupings for the development of accreditation schemes PAS 1616  – A generic framework of standards for accrediting clinical services from the British Standards Institute  Information management, data, and systems Support for development of accreditation schemes
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