HEALTH DATA: crucial to improve people's health, but who collects (and potentially shares) them?
Anyone who is interested in improving people's health needs data to create evidence and inform decisions and policies, set priorities, allocate funding or run a profitable business. Unless you are going to collect your own data, it's important (but often difficult) to know where to find those data. This is the first of a series of blog posts on finding, obtaining and using health-related data (cleverly labeled HEALTH DATA). Today's overview of data sources will be followed up with more detail on specific sources in future posts.
Health data are collected by a variety of organizations, most of which are directly involved in the provision of health care. Those organizations' websites are a good place to start looking for data. Unfortunately, a lot of data aren't shared for confidentiality, capacity, competitive and other reasons. More on those reasons (and how to overcome them) later.
- Governments conduct surveys and censuses, run registries, registration systems (most notably vital registration) and surveillance systems (side note: in global public health, surveillance systems have a positive connotation, providing timely data to inform public health priorities). They also collect administrative, budget and other financial and administrative data related to health. Data are collected on the national, province, district and municipality level. Key sources are national statistical organizations, ministries of health, census bureaus and registrars general.
- International and bilateral organizations provide financial and technical assistance for data collection activities in developing countries and often aggregate data from various countries. Key data providers include the UN system (WHO, UNICEF, UNFPA, UN Population Division, UN Statistics Division, World Bank), European Union, USAID (USA), DFID (UK)
- Health facilities collect data on individuals' health (medical health records) as well as on services provided, payment and health resources. Facilities can be roughly divided into four categories: hospitals, outpatient clinics, emergency services, and general practitioners. Health facility data are sometimes aggregated and made available by governmental organizations like HCUP (US), non-profit organizations like CIHI (Canada), and commercial organizations like IMS.
- Health plans and insurances collect claims data with details on patients' diagnoses, treatments and payments; those data are often not made available to third parties, but some providers, e.g. Medicare and Medicaid, have defined processes for data access
- Pharmacies can provide data about prescriptions and cost, e.g. chains like Walgreen's in the US or Pharma in Japan
- Pharmaceutical and medical device companies conduct trials and other research from genetic to human and population scale.
- Academic and other researchers collect data ranging from interview and examination surveys to longitudinal, cohort, and other studies, are frequently involved in research and data collection by other organizations, and provide analyses and estimates based on the other data sources listed
- Non-profit organizations / NGOs active in the global public health field collect data related to their programs and projects.
- Demographic surveillance sites (DSS) capture detailed demographic and health-related data on specific populations; a substantial number of DSS are part of the Indepth Network.
Health data are a fascinating area, and this is just an introductory review of the tip of the iceberg. Next up: aggregators of health data. Please leave information about additional data sources and providers in the comments, and let me know which topics you are most interested in for future posts.