Research Data Australia is an Internet-based collection designed to promote visibility of Australian research data in search engines such as Google and Bing. Research Data Australia aims to provide a comprehensive window into the Australian Research Data Commons. It provides connections between data, projects, researchers and services across organisations and discipline

Research is producing larger and more complex data than ever before. It is imperative that these data outputs are effectively managed and shared. Better data – better described, more connected, more integrated and organised, more accessible, more easily used for new purposes – allows new questions to be investigated, larger issues to be investigated, and data landscapes to be explored.

The national data opt-out policy was introduced on 25 May 2018, enabling patients to opt out from the use of their data for anything other than their individual care and treatment , for example research or planning purposes, in line with the recommendations of the National Data Guardian in her Review of Data Security, Consent and Opt-Outs. By March 2020 all health and adult social care organisations are required to be compliant with the national data opt-out policy, where they are using confidential patient information for purposes beyond an individual's care and treatment.

On July 1, NITRD released the National Privacy Research Strategy. Research agencies across government participated in the development of the strategy, reviewing existing Federal research activities in privacy-enhancing technologies, soliciting inputs from the private sector, and identifying priorities for privacy research funded by the Federal Government. The National Privacy Research Strategy calls for research along a continuum of challenges, from how people understand privacy in different situations and how their privacy needs can be formally specified, to how these needs can be addressed, to how to mitigate and remediate the effects when privacy expectations are violated.

This report is written evidence compiled by the National Data Guardian (NDG) and submitted to the UK Parliament’s Science and Technology Committee in February 2022 for consideration as part of its inquiry: The right to privacy: digital data. This evidence was also published by the committee on its website.

This response does not address all areas set out for exploration in the inquiry, only those that fall under the NDG’s remit. This inquiry asked about sharing data across a wide range of different organisations such as ‘government departments, other public bodies, research institutions and commercial organisations’. Other questions asked about sharing within discrete contexts such as ‘health and care contexts’. Given the NDG’s remit, this response only addresses the sharing of health and adult social care information.

This dataset describes the number and density of health care services in each census tract in the United States. The data includes counts, per capita densities, and area densities per tract for many types of businesses in the health care sector, including doctors, dentists, mental health providers, hospitals, nursing homes, and pharmacies.

These data are part of NACJD's Fast Track Release and are distributed as they there received from the data depositor. The files have been zipped by NACJD for release, but not checked or processed except of the removal of direct identifiers. Users should refer to the accompany readme file for a brief description of the files available with this collections and consult the investigator(s) if further information is needed.The purpose of the study was to implement a "platform-based" methodology for collecting data about police organizations and the communities they serve with the goals of generating in-depth standardized information about police organizations, personnel and practices and to help move policing in the direction of evidence-based "learning-organizations" by providing judicious feedback to police agencies and policy makers. The research team conducted three web-based Law Enforcement Organizations (LEO) surveys of sworn and civilian law enforcement employees (LEO Survey A Data, n=22,765; LEO Survey B Data, n=15,825; and LEO Survey C Data, n=16,483). The sample was drawn from the 2007 Law Enforcement Management and Administrative Statistics (LEMAS) database. Agencies with 100 to 3,000 sworn police personnel were eligible for participation. To collect data for the Police-Community Interaction (PCI) survey (PCI Data, n=16,659), each week department employees extracted names and addresses of persons who had recent contact with a police officer because of a reported crime incident, traffic accident or traffic stop. Typically, the surveys were completed within two to four weeks of the encounter.

The National Health Interview Survey (NHIS) is the principal source of information on the health of the civilian noninstitutionalized population of the United States and is one of the major data collection programs of the National Center for Health Statistics (NCHS) which is part of the Centers for Disease Control and Prevention (CDC). The National Health Survey Act of 1956 provided for a continuing survey and special studies to secure accurate and current statistical information on the amount, distribution, and effects of illness and disability in the United States and the services rendered for or because of such conditions. The survey referred to in the Act, now called the National Health Interview Survey, was initiated in July 1957. Since 1960, the survey has been conducted by NCHS, which was formed when the National Health Survey and the National Vital Statistics Division were combined. NHIS data are used widely throughout the Department of Health and Human Services (DHHS) to monitor trends in illness and disability and to track progress toward achieving national health objectives. The data are also used by the public health research community for epidemiologic and policy analysis of such timely issues as characterizing those with various health problems, determining barriers to accessing and using appropriate health care, and evaluating Federal health programs. The NHIS also has a central role in the ongoing integration of household surveys in DHHS. The designs of two major DHHS national household surveys have been or are linked to the NHIS. The National Survey of Family Growth used the NHIS sampling frame in its first five cycles and the Medical Expenditure Panel Survey currently uses half of the NHIS sampling frame. Other linkage includes linking NHIS data to death certificates in the National Death Index (NDI). While the NHIS has been conducted continuously since 1957, the content of the survey has been updated about every 10-15 years. In 1996, a substantially revised NHIS questionnaire began field testing. This revised questionnaire, described in detail below, was implemented in 1997 and has improved the ability of the NHIS to provide important health information.

The National Hospital Care Survey (NHCS) is designed to provide accurate and reliable health care statistics that answer key questions of interest to health care and public health professionals, researchers, and health care policy makers. This includes tracking the latest trends affecting hospitals and health care organizations and factors that influence the use of health care resources, the quality of health care, and disparities in health care services provided to population subgroups in the United States. NHCS collects data on patient care in hospital-based settings to describe patterns of health care delivery and utilization in the United States. Settings include inpatient, emergency (EDs), and outpatient departments (OPDs). The survey will provide hospital utilization statistics for the Nation. In addition, NHCS will also be able to monitor national trends in substance use-related ED visits including opioid visits.

The National Institutes of Health (NIH) Data Book (NDB) provides basic summary statistics on extramural grants and contract awards, grant applications, the organizations that NIH supports, the trainees and fellows supported through NIH programs, and the national biomedical workforce. The Data Book is organized into categories and sub-categories, each of which will display related reports together on a single page. Most reports provide both an interactive chart visualization and the underlying data table.

The National Institute of Food and Agriculture is committed to serving its stakeholders, Congress, and the public by using new technologies to advance greater openness. To strengthen transparency and promote open government, NIFA is providing easy access to data and metrics on how the agency disseminates funding. NIFA is committed to increasing transparency and making technical advancements to ensure that data is easily accessible. The Data Gateway provides the ability to filter and export data. Recently added features to the Congressional District Map and Data Gateway Search make for an improved user experience when searching and reporting information on NIFA-administered grants and projects! New interactive features in the Congressional District Map allow users to see the total amount of funding by state and further to drill down to the individual awards. Funding information is available for awards made from 2011-2015. Simply click on a state listing on the right of the screen. No need to create your own search if you are looking for NIFA funding by Congressional District. Key enhancements in the Data Gateway Search tool include:

A project-based display of data Embedded help text within tool Drop down lists allowing you to choose the fields you want to search and display Expanded filter lists

The Current Research Information System (CRIS) provides documentation and reporting for ongoing agricultural, food science, human nutrition, and forestry research, education and extension activities for the United States Department of Agriculture; with a focus on the National Institute of Food and Agriculture (NIFA) grant programs. Projects are conducted or sponsored by USDA research agencies, state agricultural experiment stations, land-grant universities, other cooperating state institutions, and participants in NIFA-administered grant programs, including Small Business Innovation Research and Agriculture and Food Research Initiative. The Planning, Accountability, & Reporting Staff office of NIFA is responsible for maintaining CRIS. Resources in this dataset:Resource Title: NIFA Reporting Portal. File Name: Web Page, url: https://portal.nifa.usda.gov Main html page for the database

Meteorological data provide information on atmospheric conditions that can affect water quality and biological and physical processes. Core elements currently measured at each National Estuarine Research Reserve (NERR) include air temperature, relative humidity, barometric pressure, wind speed, wind direction, rainfall, and photosynthetically active radiation (PAR). Optional parameters include total solar radiation.Each site maintains at least one meteorological station. Stations are placed at locations typical of local conditions or in areas where a specific need for weather data has been identified. Data are reported at 15 minute intervals. Prior to 2007, hourly and daily average data were also reported. The National Estuarine Research Reserves is a network of 28 reserves protected for long-term research, ecosystem monitoring, education, and coastal stewardship. Established by the Coastal Zone Management Act, the reserve system is a partnership program between NOAA and the coastal states. NOAA provides funding, national guidance, and technical assistance. Each reserve is managed on daily basis by a lead state agency or university with input from local partners. These data are collected as part of the NERRS System-Wide Monitoring Program (SWMP), which includes (1) abiotic indicators of water quality and weather, (2) biological monitoring, and (3) watershed, habitat, and land use mapping. Data were collected under individual Reserve NOAA grant/cooperative agreements and managed by the CDMO under NOAA grant/cooperative agreement #NA16NOS4200125 (2016) and prior grants. For more information on Reserve locations and programs, please visit www.nerrsdata.org or www.nerrs.noaa.gov.

The main goals of the National Post-acute and Long-term Care Study (NPALS) are to: (1) Estimate the supply of paid, regulated long-term care services providers; (2) Estimate key policy-relevant characteristics and practices of these providers; (3) Estimate the number of long-term care services users; (4) Estimate key policy-relevant characteristics of long-term care services users; (5) Produce national and state estimates where feasible within confidentiality and reliability standards; (6) Compare across provider sectors; and (7) Monitor trends over time.

NPALS used a two-stage probability-based sample design. In the first stage, a stratified random sample of providers were selected among adult day service centers (ADSCs); in the second stage, current services users (participants in ADSCs) were randomly selected.

The provider questionnaire included survey items on provider characteristics such as ownership, size, services offered, selected practices, and staffing; questions about aggregate user characteristics (age and race) were included. The services user datasets include user demographics, health conditions, limitations with activities of daily living, number of prescription medications, adverse events, and services used. This is the services user or participant level data file.

FI: Government Researchers: % of National Total data was reported at 7.847 % in 2022. This records a decrease from the previous number of 7.864 % for 2021. FI: Government Researchers: % of National Total data is updated yearly, averaging 10.681 % from Dec 2004 (Median) to 2022, with 19 observations. The data reached an all-time high of 11.575 % in 2011 and a record low of 7.847 % in 2022. FI: Government Researchers: % of National Total data remains active status in CEIC and is reported by Organisation for Economic Co-operation and Development. The data is categorized under Global Database’s Finland – Table FI.OECD.MSTI: Number of Researchers and Personnel on Research and Development: OECD Member: Annual.

In Finland: a new methodology for calculating the time spent on R&D by personnel in the Higher Education sector was implemented in 2011. As a consequence, R&D personnel (measured in FTE) in the Higher Education sector decreased.

From 2004, R&D personnel data are available according to occupation. Previous breakdown was by formal qualification.

From 1998 to 2004, due to a greater number of responses to the BE survey on the group level, the questionnaire category funds from other foreign enterprises of the group was merged with business enterprise funds (own funds) thus reducing the share of funds coming from the rest of the world.

From 1997, the Higher Education sector includes central university hospitals.

From 1997 and the implementation of ISCED 97, “Researchers” also includes holders of engineering degrees and graduates of vocational polytechnics, degrees which are now classified in First Stage Tertiary Education (ISCED 5A).

In 1991, the method for measuring R&D expenditures in the Government and the Higher Education sectors changed. Since 1994, PNP institutions are included in the Government sector in non-survey years.

Data on GBARD have been revised back to 1991 because of changes in R&D coefficients for certain research institutes. In 1991, there was an upward adjustment in the total due to the inclusion of pension costs. From 1995, funds received by the State research institutes from external sources are excluded from Government allocations. As of 1997, the data covers allocations for central university hospitals.

A database of federally funded biomedical research projects conducted at universities, hospitals, and other research institutions that provides a central point of access to reports, data, and analyses of NIH research. The RePORTER has replaced the CRISP database. The database, maintained by the Office of Extramural Research at the National Institutes of Health, includes projects funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Health Care Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).

Slides from the introduction to a panel session at eResearch Australasia (Melbourne, October 2016). Panellists: Kate LeMay (Australian National Data Service), Gabrielle Hirsch (Walter and Eliza Hall Institute of Medical Research), Gordon McGurk (National Health and Medical Research Council) and Jeff Christiansen (Intersect).Short abstractHuman medical, health and personal data are a major category of sensitive data. These data need particular care, both during the management of a research project and when planning to publish them. The Australian National Data Service (ANDS) has developed guides around the management and sharing of sensitive data. ANDS is convening this panel to consider legal, ethical and secure storage issues around sensitive data, in the stages of the research life cycle: research conception and planning, commencement of research, data collection and processing, data analysis storage and management, and dissemination of results and data access.

The legal framework around privacy in Australia is complex and differs between states. Many Acts regulate the collection, use, disclosure and handling of private data. There are also many ethical considerations around the management and sharing of sensitive data. The National Health and Medical Research Council (NHMRC) has developed the Human Research Ethics Application (HREA) as a replacement for the National Ethics Application Form (NEAF). The aim of the HREA is to be a concise streamlined application to facilitate efficient and effective ethics review for research involving humans. The application will assist researchers to consider the ethical principles of the National Statement of Ethical Conduct in Human Research (2007) in relation to their research.

National security standard guidelines and health and medical research policy drivers underpin the need for a national fit-for-purpose health and medical research data storage facility to store, access and use health and medical research data. med.data.edu.au is an NCRIS-funded facility that underpins the Australian health and medical research sector by providing secure data storage and compute services that adhere to privacy and confidentiality requirements of data custodians who are responsible for human-derived research datasets.

Historical data for National Research Corp (NAS:NRC), including annual and quarterly figures with up to 30 years of history.

The National Database for Clinical Trials Related to Mental Illness (NDCT) is an extensible informatics platform for relevant data at all levels of biological and behavioral organization (molecules, genes, neural tissue, behavioral, social and environmental interactions) and for all data types (text, numeric, image, time series, etc.) related to clinical trials funded by the National Institute of Mental Health. Sharing data, associated tools, methodologies and results, rather than just summaries or interpretations, accelerates research progress. Community-wide sharing requires common data definitions and standards, as well as comprehensive and coherent informatics approaches for the sharing of de-identified human subject research data. Built on the National Database for Autism Research (NDAR) informatics platform, NDCT provides a comprehensive data sharing platform for NIMH grantees supporting clinical trials.

The National Couples' Health and Time Study (NCHAT) is a population-based study of couples in America that contains representative samples of racial and ethnic diverse and sexual and gender diverse individuals. NCHAT entered the field on September 1, 2020, and data collection completed in April 2021. A follow-up survey (Wave 2) was fielded in 2022. The Wave 1 sample includes 3,642 main respondents. The sample frame included adults in the United States who ranged in age from 20-60 years old, who were married or cohabiting, and who were able to read English or Spanish. About 1,515 partners participated. NCHAT sample participants were recruited through the Gallup Panel. About 9 percent of the sample was non-Latinx Black, 6 percent non-Latinx Asian, 5 percent non-Latinx Multirace, 16 percent Latinx, and 1 percent another racial or ethnic identity. Approximately 55 percent of the sample identified as heterosexual, 20 percent as gay or lesbian, 10 percent as bisexual, and 15 percent as another sexual identity or multiple sexual identities. The sample was about evenly split between men and women, and almost 3 percent identified as another gender identity. 27 percent of couples were the same gender, and 4 percent were non-binary. About 75 percent were married and the remainder were cohabiting. The average age was 45. 65 percent of the sample had no children. One-third of the sample was in an interracial couple. 10 percent were born outside the US. Survey, time diary, experience sampling method, and geospatial data were collected. NCHAT is uniquely suited to address COVID, stress, family functioning, and physical and mental health and includes an abundance of contextual and acute measures of race and racism, sexism, and heterosexism.

FI: Total Business Enterprise R&D Personnel: % of National Total data was reported at 60.912 % in 2021. This records an increase from the previous number of 58.821 % for 2020. FI: Total Business Enterprise R&D Personnel: % of National Total data is updated yearly, averaging 55.913 % from Dec 1981 (Median) to 2021, with 34 observations. The data reached an all-time high of 60.912 % in 2021 and a record low of 46.473 % in 1981. FI: Total Business Enterprise R&D Personnel: % of National Total data remains active status in CEIC and is reported by Organisation for Economic Co-operation and Development. The data is categorized under Global Database’s Finland – Table FI.OECD.MSTI: Number of Researchers and Personnel on Research and Development: OECD Member: Annual.

In Finland: a new methodology for calculating the time spent on R&D by personnel in the Higher Education sector was implemented in 2011. As a consequence, R&D personnel (measured in FTE) in the Higher Education sector decreased. From 2004, R&D personnel data are available according to occupation. Previous breakdown was by formal qualification.From 1998 to 2004, due to a greater number of responses to the BE survey on the group level, the questionnaire category funds from other foreign enterprises of the group was merged with business enterprise funds (own funds) thus reducing the share of funds coming from the rest of the world.From 1997, the Higher Education sector includes central university hospitals.From 1997 and the implementation of ISCED 97, 'Researchers' also includes holders of engineering degrees and graduates of vocational polytechnics, degrees which are now classified in First Stage Tertiary Education (ISCED 5A).In 1991, the method for measuring R&D expenditures in the Government and the Higher Education sectors changed. Since 1994, PNP institutions are included in the Government sector in non-survey years.Data on GBARD have been revised back to 1991 because of changes in R&D coefficients for certain research institutes. In 1991, there was an upward adjustment in the total due to the inclusion of pension costs. From 1995, funds received by the State research institutes from external sources are excluded from Government allocations. As of 1997, the data covers allocations for central university hospitals.

FI: Business Enterprise Researchers: % of National Total data was reported at 60.451 % in 2022. This records a decrease from the previous number of 62.033 % for 2021. FI: Business Enterprise Researchers: % of National Total data is updated yearly, averaging 56.774 % from Dec 2004 (Median) to 2022, with 19 observations. The data reached an all-time high of 62.033 % in 2021 and a record low of 55.290 % in 2010. FI: Business Enterprise Researchers: % of National Total data remains active status in CEIC and is reported by Organisation for Economic Co-operation and Development. The data is categorized under Global Database’s Finland – Table FI.OECD.MSTI: Number of Researchers and Personnel on Research and Development: OECD Member: Annual.

In Finland: a new methodology for calculating the time spent on R&D by personnel in the Higher Education sector was implemented in 2011. As a consequence, R&D personnel (measured in FTE) in the Higher Education sector decreased.

From 2004, R&D personnel data are available according to occupation. Previous breakdown was by formal qualification.

From 1998 to 2004, due to a greater number of responses to the BE survey on the group level, the questionnaire category funds from other foreign enterprises of the group was merged with business enterprise funds (own funds) thus reducing the share of funds coming from the rest of the world.

From 1997, the Higher Education sector includes central university hospitals.

From 1997 and the implementation of ISCED 97, “Researchers” also includes holders of engineering degrees and graduates of vocational polytechnics, degrees which are now classified in First Stage Tertiary Education (ISCED 5A).

In 1991, the method for measuring R&D expenditures in the Government and the Higher Education sectors changed. Since 1994, PNP institutions are included in the Government sector in non-survey years.

Data on GBARD have been revised back to 1991 because of changes in R&D coefficients for certain research institutes. In 1991, there was an upward adjustment in the total due to the inclusion of pension costs. From 1995, funds received by the State research institutes from external sources are excluded from Government allocations. As of 1997, the data covers allocations for central university hospitals.