How we can place a value on health care data

Curated on Posted on by Stefaan Verhulst

Report by E&Y: “Unlocking the power of health care data to fuel innovation in medical research and improve patient care is at the heart of today’s health care revolution. When curated or consolidated into a single longitudinal dataset, patient-level records will trace a complete story of a patient’s demographics, health, wellness, diagnosis, treatments, medical procedures and outcomes. Health care providers need to recognize patient data for what it is: a valuable intangible asset desired by multiple stakeholders, a treasure trove of information.

Among the universe of providers holding significant data assets, the United Kingdom’s National Health Service (NHS) is the single largest integrated health care provider in the world. Its patient records cover the entire UK population from birth to death.

We estimate that the 55 million patient records held by the NHS today may have an indicative market value of several billion pounds to a commercial organization. We estimate also that the value of the curated NHS dataset could be as much as £5bn per annum and deliver around £4.6bn of benefit to patients per annum, in potential operational savings for the NHS, enhanced patient outcomes and generation of wider economic benefits to the UK….(More)”.

Review into bias in algorithmic decision-making

Curated on Posted on by Stefaan Verhulst

Interim Report by the Centre for Data Ethics and Innovation (UK): The use of algorithms has the potential to improve the quality of decision- making by increasing the speed and accuracy with which decisions are made. If designed well, they can reduce human bias in decision-making processes. However, as the volume and variety of data used to inform decisions increases, and the algorithms used to interpret the data become more complex, concerns are growing that without proper oversight, algorithms risk entrenching and potentially worsening bias.

The way in which decisions are made, the potential biases which they are subject to and the impact these decisions have on individuals are highly context dependent. Our Review focuses on exploring bias in four key sectors: policing, financial services, recruitment and local government. These have been selected because they all involve significant decisions being made about individuals, there is evidence of the growing uptake of machine learning algorithms in the sectors and there is evidence of historic bias in decision-making within these sectors. This Review seeks to answer three sets of questions:

  1. Data: Do organisations and regulators have access to the data they require to adequately identify and mitigate bias?
  2. Tools and techniques: What statistical and technical solutions are available now or will be required in future to identify and mitigate bias and which represent best practice?
  3. Governance: Who should be responsible for governing, auditing and assuring these algorithmic decision-making systems?

Our work to date has led to some emerging insights that respond to these three sets of questions and will guide our subsequent work….(More)”.

Trusted data and the future of information sharing

Curated on Posted on by Stefaan Verhulst

 MIT Technology Review: “Data in some form underpins almost every action or process in today’s modern world. Consider that even farming, the world’s oldest industry, is on the verge of a digital revolution, with AI, drones, sensors, and blockchain technology promising to boost efficiencies. The market value of an apple will increasingly reflect not only traditional farming inputs but also some value of modern data, such as weather patterns, soil acidity levels and agri-supply-chain information. By 2022 more than 60% of global GDP will be digitized, according to IDC.

Governments seeking to foster growth in their digital economies need to be more active in encouraging safe data sharing between organizations. Tolerating the sharing of data and stepping in only where security breaches occur is no longer enough. Sharing data across different organizations enables the whole ecosystem to grow and can be a unique source of competitive advantage. But businesses need guidelines and support in how to do this effectively.   

This is how Singapore’s data-sharing worldview has evolved, according to Janil Puthucheary, senior minister of state for communications and information and transport, upon launching the city-state’s new Trusted Data Sharing Framework in June 2019.

The Framework, a product of consultations between Singapore’s Infocomm Media Development Authority (IMDA), its Personal Data Protection Commission (PDPC), and industry players, is intended to create a common data-sharing language for relevant stakeholders. Specifically, it addresses four common categories of concerns with data sharing: how to formulate an overall data-sharing strategy, legal and regulatory considerations, technical and organizational considerations, and the actual operationalizing of data sharing.

For instance, companies often have trouble assessing the value of their own data, a necessary first step before sharing should even be considered. The framework describes the three general approaches used: market-, cost-, and income-based. The legal and regulatory section details when businesses can, among other things, seek exemptions from Singapore’s Personal Data Protection Act.

The technical and organizational chapter includes details on governance, infrastructure security, and risk management. Finally, the section on operational aspects of data sharing includes guidelines for when it is appropriate to use shared data for a secondary purpose or not….(More)”.

Digital tools for Citizens’ Assemblies

Curated on Posted on by Stefaan Verhulst

Report by Alex Parsons: “… result of mySociety’s research into how digital tools can be used as part of the process of a Citizens’ Assembly.

We reviewed how Citizens’ Assemblies to date have approached technology, and explored where lessons can be learned from other deliberative or consultative activities.

While there is no unified Citizens’ Assembly digital service, there are a number of different tools that can be used to enhance the process – and that most of these are generic and well-tested products and services. We also tried to identify where innovative tools could be put to new uses, while always bearing in mind the core importance of the in-person deliberative nature of assemblies….(More)”.

What If There Were More Policy Futures Studios?

Curated on Posted on by Stefaan Verhulst

Essay by Lucy Kimbell: “Unexpected election results are intersecting in new and often disturbing ways with enduring issues such as economic and social inequalities; climate change; global movements of people fleeing war, poverty and environmental change; and the social and cultural consequences of long-term cuts in public funding. These developments are punctuated by dramatic events such as war, terrorist attacks and disasters such as floods, fires and other effects of changes in rainfall and temperature. Many of the available public policy visions of the future fail to connect with people’s day-to-day realities and challenges they face. Where could alternative visions and more effective public policy solutions come from? And what roles can design and futures practices play in constituting these?

For people using design-based and arts-based approaches in relation to social and public policy issues, the practices, structures and processes associated with institutions making public policy present a paradox. On
the one hand, creative methods can enable people to participate in assessing how things are, in ways that are meaningful to them, and imagining how things could be different, and to do so in collaboration with people they might not ordinarily engage with. Workshops and spaces for exploring futures such as design jams, hackathons, digital platforms, exhibitions and co-working hubs can open up a distributed creative capacity for negotiating potentialities in relation to current actualities. The strong emphasis in design on how people experience issues – understanding things on their terms, informed by the principles of ethnography – can open up participation, critique and creativity. Such practices can surface and open up difficult questions about institutions and how they work….(More)”.

AI & the sustainable development goals: The state of play

Curated on Posted on by Stefaan Verhulst

Report by 2030Vision: “…While the world is making progress in some areas, we are falling behind in delivering the SDGs overall. We need all actors – businesses, governments, academia, multilateral institutions, NGOs, and others – to accelerate and scale their efforts to deliver the SDGs, using every tool at their disposal, including artificial intelligence (AI).

In December 2017, 2030Vision published its first report, Uniting to Deliver Technology for the Global Goals, which addressed the role of digital technology – big data, robotics, internet of things, AI, and other technologies – in achieving the SDGs.

In this paper, we focus on AI for the SDGs. AI extends and amplifies the capacity of human beings to understand and solve complex, dynamic, and interconnected systems challenges like the SDGs. Our main objective was to survey the landscape of research and initiatives on AI and the SDGs to identify key themes and questions in need of further exploration. We also reviewed the state of AI and the SDGs in two sectors – food and agriculture and healthcare – to understand if and how AI is being deployed to address the SDGs and the challenges and opportunities in doing so….(More)”.

Seize the Data: Using Evidence to Transform How Federal Agencies Do Business

Curated on Posted on by Stefaan Verhulst

Report by the Partnership for Public Service: “The use of data analysis, rigorous evaluation and a range of other credible strategies to inform decision-making is becoming more common across government. Even so, the movement is nascent, with leading practices implemented at some agencies, but not yet widely adopted. Much more progress is necessary. In fact, the recently enacted Foundations for Evidence-Based Policymaking Act, as well as the recently released draft Federal Data Strategy Action Plan, both prioritize broader adoption of leading practices.

To support that effort, this report highlights practical steps that agencies can take to become more data-driven and evidence-based. The findings emerged from a series of workshops and interviews conducted between April 2018 and May 2019 by the Partnership for Public Service and Grant Thornton. From these sessions, we learned that the most forward-thinking agencies rely on multiple approaches, including:
• Using top-down and bottom-up approaches to build evidence-based organizations.
• Driving longer-term and shorter-term learning.
• Using existing data and new data.
• Strengthening internal capacity and creating external research practitioner partnerships.
This report describes what these strategies look like in practice, and shares real-world and replicable examples of how leading agencies have become more data-driven and evidence-based….(More)”.

Challenges in using data across government

Curated on Posted on by Stefaan Verhulst

National Audit Office (UK): “Data is crucial to the way government delivers services for citizens, improves its own systems and processes, and makes decisions. Our work has repeatedly highlighted the importance of evidence-based decision-making at all levels of government activity, and the problems that arise when data is inadequate.

Government recognises the value of using data more effectively, and the importance of ensuring security and public trust in how it is used. It plans to produce a new national data strategy in 2020 to position “the UK as a global leader on data, working collaboratively and openly across government”.

To achieve its ambitions government will need to resolve fundamental challenges around how to use and share data safely and appropriately, and how to balance competing demands on public resources in a way that allows for sustained but proportionate investment in data. The future national data strategy provides the government with an opportunity to do this, building on the renewed interest and focus on the use of data within government and beyond.

Content and scope of the report

This report sets out the National Audit Office’s experience of data across government, including initial efforts to start to address the issues. From our past work we have identified three areas where government needs to establish the pre-conditions for success: clear strategy and leadership; a coherent infrastructure for managing data; and broader enablers to safeguard and support the better use of data. In this report we consider:

  • the current data landscape across government (Part One);
  • how government needs a clear plan and leadership to improve its use of data (Part Two);
  • the quality, standards and systems needed to use data effectively (Part Three); and
  • wider conditions and enablers for success (Part Four).

Concluding remarks

Past examples such as Windrush and Carer’s Allowance show how important good‑quality data is, and the consequences if not used well. Without accurate, timely and proportionate data, government will not be able get the best use out of public money or take the next step towards more sophisticated approaches to using data that can reap real rewards.

But despite years of effort and many well-documented failures, government has lacked clear and sustained strategic leadership on data. This has led to departments under-prioritising their own efforts to manage and improve data. There are some early signs that the situation is improving, but unless government uses the data strategy to push a sea change in strategy and leadership, it will not get the right processes, systems and conditions in place to succeed, and this strategy will be yet another missed opportunity….(More)”.

Modernizing Congress: Bringing Democracy into the 21st Century

Curated on Posted on by Stefaan Verhulst

Report by Lorelei Kelly: “Congress represents a national cross section of civic voice. It is potentially the most diverse market for ideas in government and should be reaping the benefits of America’s creativity and knowledge. During our transition into the 21st century, this civic information asset — from lived experience to structured data — should fuel the digital infrastructure of a modern representative system. Yet Congress has thus far failed to tap this resource on behalf of its legislative and deliberative functions.

Today’s Congress can’t compete on digital infrastructure or modern data methods with the executive branch, the media or the private sector. To be sure, information weaponization, antique technology and Congress’ stubborn refusal to fund itself has arrested its development of a digital infrastructure. Congress is knowledge incapacitated, physically disconnected and technologically obsolete. In this condition, it cannot fulfill its First Branch duties as laid out in Article I of the U.S. Constitution.

Fortunately, changing the direction of Congress is now in sight. Before the end of January 2019, (1) the Foundations for Evidence-Based Policymaking Act became law, (2) the House created a Select Committee on Modernization, and (3) Congress began to restore its internal science and technology capacity.

Modernizing Congress lays out a plan to accelerate this institutional progress. It scopes out the challenge of including civic voice in the legislative and deliberative process. It then identifies trusted local information intermediaries who could act as key components of a modern knowledge commons in Congress. With three case studies, the report illustrates how members and staff are finding new ways to build connection and gather useful constituent input at the district level. The report explores an urban, rural and suburban district. It concludes that while individual members are leveraging technology to connect and use new forms of civic voice from constituents, what Congress needs most is a systemwide digital infrastructure and updated institutional standards for data collection….(More)”.