3.3 Health care records

Health care records provide an obvious source of information for health care planning using GIS. However, there are specific difficulties associated with the use of data from the health care system itself for statistical and applied purposes. This learning object reviews the types of information which can be learned from records maintained by the health care system and encourages students to examine its potential strengths and weaknesses.

In general terms, operational information is collected by government departments and private organizations for some defined purpose associated with the organization or delivery of a service. The processes of data recording and archiving are governed by operational requirements which may be quite different from those required for secondary uses of the data. In the case of the health care system, the primary motivations for collecting data are to monitor care – often for the purpose of determining payments – and record the treatment of individual patients to assist in clinical decision-making. These purposes will not always lead to the generation of data which are suitable for health care planning. The data collected may be quite different in different national contexts: although national databases may exist which monitor individuals’ entitlement to health care, the delivery of care by many different service providers can mean that there is no integrated database describing the treatment received at the population level. Even in centrally-organized healthcare systems such as that in the UK, the provision of primary care by many separate general practitioners, each using locally-controlled records systems, means that understanding overall patterns of health care provision can be remarkably challenging. The records held by GPs still contain a very large proportion of paper records containing medical test results, prescribed pharmaceuticals, correspondence with hospital specialists and notes of consultations dating back many years. Few practices have yet achieved full digitization of this information, although many now maintain computerized records of all current health care. Important definitional differences may also be apparent between the health care system and the needs of population-level health care planning: the UK’s Hospital Episode Statistics (HES) data provide the most detailed account of treatment given in UK National Health Service hospitals but the information is recorded in terms of distinct treatment episodes – of interest for health care funding and operational management – rather than information about individual patients which would contribute directly to measures of treatment levels and population need.

In many developing countries, where there is no centrally organized health care system and no infrastructure for health data management, records may be maintained entirely locally in relation to treatments given, or indeed the only records kept may be in terms of simple activity data for hospitals and clinics, with no unit-level information regarding the individuals receiving care. Any attempt to use data from the health care system in this context can never deal directly with patient-level information, which is more likely to be reliant on locally conducted health surveys.

In all cases, information collected by medical staff in the process of providing care is treated as confidential to the doctor-patient relationship and is not automatically available in any disaggregated form for the purposes of health care planning or research. For this reason, research studies may need to collect basic data separately, having obtained the explicit consent of the study participants for their information to be used. One of the most important data elements for spatial planning is geographical location (for example, of patients and treatment centres), but patients’ addresses are generally considered one of the more sensitive items of information and only aggregated information may be available – see, for example, Curtis et al. (2006). Applications to access personal information for non-clinical purposes will generally requires approval by an ethical committee or other data custodian, and restrictions may be applied on data use.

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