Access see Access
Biological data Biological materials of human origin, like organs, tissues, cells or blood as well as data on adverse drug reactions (European Data Protection Directive 95/46/EC).
Data controller the "'controller' shall mean the natural or legal person, public authority, agency or any other body which alone or jointly with others determines the purposes and means of the processing of personal data"(European Data Protection Directive 95/46/EC).
Data governance "the process by which responsibilities of stewardship are conceptualized and carried out." (Rosenbaum, 2010)
Data protection authorities The Data Protection Authorities (DPAs) are the public authorities responsible for monitoring the application within its territory of the provisions adopted by the Member States pursuant to the Privacy Directive (European Data Protection Directive 95/46/EC).
Data stewardship "refers to responsibilities and accountabilities associated with managing, collecting, viewing, storing, sharing, disclosing, or otherwise making use of patient-oriented health information." (Safran, Bloomrosen et al. 2007)
Data steward "person or organization delegated the responsibility for managing a specific set of data resources." (OECD Glossary of Statistical Terms)
Data subject might be defined as the natural person identified or identifiable linked to the personal data (European Data Protection Directive 95/46/EC).
End of life care There is no exact definition of end of life; however, the evidence supports the following components: (1) the presence of a chronic disease(s) or symptoms or functional impairments that persist but may also fluctuate; and (2) the symptoms or impairments resulting from the underlying irreversible disease require formal (paid, professional) or informal (unpaid) care and can lead to death. Often used as a synonym for “palliative care”, end-of life in fact includes but is not limited to palliative care for patients close to death (NIH 2004)
Efficiency see Efficiency
Electronic health record (EHR) The longitudinal electronic record of an individual patient that contains or virtually links together records from multiple electronic medical records (EMRs) which can then be shared (interoperable) (OECD, 2011b).
Electronic health record systems Systems that contain EHRs and aim to improve the quality, safety and efficiency of health care (OECD, 2011b).
Equity see Equity
Ethics Committee "an independent body in a Member State, consisting of healthcare professionals and non-medical members, whose responsibility it is to protect the rights, safety and wellbeing of human subjects involved in a trial and to provide public assurance of that protection, by, among other things, expressing an opinion on the trial protocol, the suitability of the investigators and the adequacy of facilities, and on the methods and documents to be used to inform trial subjects and obtain their informed consent" (European Clinical Trial Directive 2001/20/EC).
Freely given consent voluntary decision, by an individual in possession of all of his faculties, taken in the absence of coercion of any kind, be it social, financial, psychological or other (European Data Protection Directive 95/46/EC).
Health “A state of complete physical, mental, and social well-being and not merely the absence of diseases or infirmity (WHO, 1948)”
Health Care "the combined functioning of public health and personal health care services"
Health related data Includes medical data (e.g. doctor referrals and prescriptions, medical examination reports, laboratory tests, radiographs, etc), as well as administrative and financial data relating to health (e.g. documents concerning hospital admissions, social security number, medical appointments scheduling, invoices for healthcare service provision, etc)" (European Data Protection Directive 95/46/EC).
Health System “All activities whose primary purpose is to promote, restore and maintain health (WHO, 2000).”
Health System Design and Context "pertinent country and health system policy and delivery characteristics, which will influence the health system in terms of its costs, expenditure and utilization patterns that must be considered in order to contextualize the findings of the health performance tier (Arah et al., 2006)"
Hospitals as referred to in the tab "care provider" all licensed establishments primarily engaged in providing medical, diagnostic, and treatment services to in-patients. The OECD classification distinguishes general hospitals, mental health as well as specialty hospitals (OECD, 2000 and 2011a)
Infectious diseases (or transmissible or communicable): caused by pathogenic microorganisms, such as bacteria, viruses, parasites or fungi; the diseases can be spread, directly or indirectly, from one person to another. Opposite of "non communicable diseases" (WH0 2013a).
Informed consent means consent by the data subject based upon an appreciation and understanding of the facts and implications of an action (European Data Protection Directive 95/46/EC).
Input “What is put in, taken in, or operated on by any process or system (Oxford Dictionary)”.
Long term care care for people needing daily living support over a prolonged period of time (OECD, 2011a).
Mental health state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community. (WHO 2007)
Non communicable diseases medical condition or disease which is of long duration and generally slow progression. The four main types of noncommunicable diseases are cardiovascular diseases (like heart attacks and stroke), cancer, chronic respiratory diseases (such as chronic obstructed pulmonary disease and asthma) and diabetes (WHO 2013b).
Non-health care determinants of health see Non-health care determinants of health.
Output “The amount of something produced by a person, machine, or industry (Oxford Dictionary).”
Performance “The extent to which various aspects of the health system meet key objectives (Smith, Mossialos, Papanicolas & Leatherman, 2009”
Personal data any information relating to an identified or identifiable natural person (data subject); an identifiable person is one who can be identified, directly or indirectly, in particular by reference to an identification number or to one or more factors specific to his physical, physiological, mental, economic, cultural or social identity (European Data Protection Directive 95/46/EC).
Primary care primary care is the health care given by a health care provider who acts as the principal point of contact for patients within a health care system and coordinates other health professionals that the patient may need. This provider often is a general practitioner but can also be a nurse. (WHO, 2007)
Productivity “The ratio of a measure of output to a measure of input (Street & Hakkinen, 2009).”
Providers of ambulatory care as referred to in the tab "care provider": establishments primarily engaged in providing health care services directly to out-patients who do not require in-patient services. This includes establishments specialized in the treatment of day-cases and in the delivery of home care services : offices of physicians, dentists or of other health practitioners as well as out-patient care centres, medical and diagnostic laboratories and providers of home health care services, such as 24-hour home care. (OECD, 2000 and 2011a)
Sensitive data Personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, trade-union membership, and the processing of data concerning health or sex life (European Data Protection Directive 95/46/EC).
Specific consent must relate to a well-defined, concrete situation in which the processing of medical data is envisaged (European Data Protection Directive 95/46/EC).
Suppliers of medical goods as referred to in the tab "care provider": establishments whose primary activity is the manufacture or sale of medical goods to the general public for personal or household consumption or utilization; they include dispensing chemists, sale and supply of optical glasses, other vision products, hearing aids and all other medical appliances as well as manufacturers of these products and devices. (OECD, 2000 and 2011a)
Quality see Quality
Residential long-term care facilities as referred to in the tab "care provider": establishments primarily engaged in providing residential care combined with either nursing, supervisory or other types of care as required by the residents. They include three main groups: long-term nursing care facilities, mental health and substance abuse facilities and other residential long-term care facilities, e.g. geriatric rehabilitation clinics. (OECD, 2000 and 2011a)
Resources “A stock or supply of money, materials, staff, and other assets that can be drawn on by an organization in order to function effectively (Oxford Dictionary).”
Responsiveness “The extent to which a health care system treats people to meet their legitimate non-health expectations. This is a component of health care quality (Kelley & Hurst, 2006)”.
Arah, O. A., Westert, G. P., Hurst, J., & Klazinga, N. S. (2006). A conceptual framework for the OECD health care quality indicators project. International Journal for Quality in Health Care, 18(suppl 1), 5-13.
Kelley, E. and Hurst, J. (2006) 'Health care quality indicators project: Conceptual framework paper', OECD Health Working Papers, no. 23, OECD Publishing.
European Clinical Trial Directive 2001/20/EC
European Data Protection Directive 95/46/EC
NIH (2004), National Institutes of Health. State-of-the-Science Conference Statement on Improving End-of-Life Care. December 6–8, 2004. Available at http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm Website retrieved May 8th, 2013.
OECD (2000), A System of Health Accounts, OECD Publishing. Subtitle: SHA 1.0 doi:10.1787/9789264181809-en. Available at www.oecd.org/dataoecd/41/4/1841456.pdf
OECD (2011a), Help Wanted? Providing and Paying for Long-Term Care, OECD Publishing. ISBN: 9789264097582. Available at http://www.oecd.org/health/longtermcare/helpwanted Website retrieved May 8th, 2013.
OECD (2011b), Health Care Quality Indicators, Secondary analysis of health data to generate health care quality information, Draft report prepared for the Health care quality expert group, OECD Publishing. Available at http://www.garanteprivacy.it/documents/10160/2052659/1895987 Website retrieved May 13, 2013.
OECD/World Health Organization/Eurostat (2011), A System of Health Accounts: 2011 Edition, OECD Publishing. doi: 10.1787/9789264116016-en
Rosenbaum, S. (2010) 'Data Governance and Stewardship: Designing Data Stewardship Entities and Advancing Data Access' Health Service Research 45(5): 1442-1455.
Safran, C., Bloomrosen, M. et al. (2007). 'Toward a National Framework for the Secondary Use of Health Data.' Journal of the American Medical Informatics Association 14(1): 1-9.
Smith PC et al. (eds.) (2009). Performance measurement for health system improvement: experiences, challenges and prospects. Cambridge, Cambridge University Press.
Street, A. Hakkinen, U. (eds) "Health system productivity and efficiency" in Smith, PC., Mossialos, E., Papanicolas, I. and Leatherman, S. (2009) Performance measurement for health system improvement: Experiences, challenges and prospects. Cambridge: Cambridge University Press.
WHO (1948). Constitution of the World Health Organization. Geneva, World Health Organization
WHO (2000). World health report 2000. Health systems: improving performance. Geneva, World Health Organization.
WHO (2007). What is mental health? Online Q&A, March 3rd 2007. Available at http://www.who.int/features/qa/62/en/index.html Website retrieved May 8th, 2013.
WHO (2013a). Infectious Diseases in Topics. www.who.int/topics/infectious-diseases/en/ Website retrieved May 8th, 2013.
WHO (2013b). Ten facts on noncommunicable (sic) diseases. Updated March 2013. http://www.who.int/features/factfiles/noncommunicable_diseases/en/index.html. Website retrieved May 8th, 2013