Use: Data-informed health decisions¶
The following indicator is under consideration for this pilot edition of the Barometer: To what extent is there evidence of data about healthcare system capacity or performance being used by individuals to make health decisions?
Feedback on draft Global Data Barometer Indicators
You are looking at a draft indicator to be included in the expert survey of the Global Data Barometer. Between now and May 10th we are inviting your feedback on this indicator and the elements it contains. You can provide your feedback by (a) completing the feedback form below; or (b) adding in-line annotations.
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Show/hide supporting questions
Existence
- Is there evidence of healthcare system capacity or performance data being used to support individuals in making decisions related to health?
- There is no evidence of individuals using this data to make health decisions, or entities using this data to support individuals in making health decisions.
- There are isolated cases of individuals using this data to make health decisions, or entities using this data to support individuals in making health decisions.
- There are a number of cases of individuals using this kind of open data to make health decisions, or entities using this kind of open data to support individuals in making health decisions.
- There are widespread and regular cases of individuals using this kind of open data to make health decisions, or entities using this kind of open data to support individuals in making health decisions.
Elements
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There are cases where data about healthcare system capacity or performance has been used specifically to support marginalized or otherwise disadvantaged communities or populations in making health decisions. (No, Partially, Yes)
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There are cases where data about healthcare system capacity or performance has been used to support individuals in making health decisions in the context of COVID-19. (No, Partially, Yes)
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There are cases where data about healthcare system capacity or performance has been used to support individuals in making health decisions via machine learning–based tools. (No, Partially, Yes)
Extent
- There is evidence that these uses are having meaningful positive impacts.
- No
- Partially
Supporting questions: Please briefly explain and provide URLs to relevant evidence.
- Yes
Supporting questions: Please briefly explain and provide URLs to relevant evidence.
Definitions and Identification
One of the fundamental assumptions behind making data open or otherwise available is that doing so will enable actors or entities to use that data in decision-making and other acts. When healthcare system capacity and performance data are available, individuals can use that data to inform their health decisions, and entities can use it to support individuals in making health decisions. This can take many different forms, for example:
- A news article might quote an individual explaining how they consulted a hospital's performance data before choosing it as a place to give birth.
- A consumer app or site might combine data on wait times with patient reviews.
- An investigative journalism article into childhood mortality rates and how they differ at facilities across provinces might be accompanied by a database that allows for comparison across the country.
- A center for health informatics might provide a search tool for locating facilities with specific medicines or vaccines, specialists, or medical devices.
- A patient safety organization might create a database that shows how health outcomes for a marginalized group vary across facilities or providers.
- A government tele-medicine system might use capacity data to recommend specific facilities for patients seeking care.
- A medical licensing board might have a search tool for identifying providers or facilities with a history of malpractice claims or licensing complaints.
- A department of health might host a database that draws on performance data to compare the quality of care at nursing homes or assisted living facilities.
This indicator can be answered either with evidence of individuals using healthcare system capacity or performance data to make health decisions; or with evidence of entities using such data to support individual in making health decisions, provided that supporting tools can be shown to have been recently used; or with both.
From a researchability standpoint, we expect it will be easier to identify supporting tools and then determine whether they are currently in use, and so recommend starting from with that approach.
Specific examples of these include:
- A Tu Servicio from Datos Abiertos, Transparencia y Acceso a la Inform, which allows users to compare healthcare providers in Uruguay, based on parameters such as facility type, medical specialty, care goals, wait times, and patient rights.
- Medicare.gov in the United States uses healthcare system data to enable individuals to compare the quality of nearby nursing homes, hospitals, and other providers.
Note: While our focus in this indicator is on individual use of data about healthcare system capacity and performance to make health decisions, we recognize its value to many others health actors. Our focus here is pragmatic, as tools intended for use by the everyday individual will have a public aspect that makes them amenable to research. We do not, however, meant to suggest by this focus that assessing the quality of healthcare systems and providers should be considered solely or even primarily the responsibility of an individual.
Starting points
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Search:
- For websites or online tools that provide ratings, reviews, or recommendations of different healthcare facilities or providers.
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Consult:
- Officers of patient safety or patient rights organizations.
- Nurses, doctors, and other healthcare personnel, particularly those who represent institutions or own private practices.
- Epidemiologists or other public health officials managing the coronavirus pandemic.
- Officials at local or national departments of health involved in assessing healthcare facilities.
- Academic researchers who study health informatics, healthcare system management, epidemiology.
- Journalists who write about patient choice; disparities in healthcare; availability and distribution of beds, medicine, staff, and devices.
What to look for?
In addition to the basic questions around the use of data about healthcare system capacity or performance to inform or support individuals' decisions about health, please look for evidence that can answer the following questions:
- Do actors from many different backgrounds use this data to make health decisions, or is it used primarily by people who access to resources such as money, education, language, or technological literacy?
- Are individuals who are having to make health decisions in the context of COVID-19 able to draw on data tools that meaningfully speak to healthcare system capacity or performance?
- Is data about healthcare system capacity or performance being fed into machine learning–based tools, as recommendation systems or in some other way, to support individuals in making health decisions?
National and sub-national considerations
SDG target 3.9 calls for achieving universal health coverage, including financial risk protection; access to quality essential healthcare services; and access to safe, effective, quality, and affordable essential medicines and vaccines for all. Data about healthcare system capacity and performance can play a key role in helping determine the quality of available healthcare services. But while in theory making data available supports actors of all sorts in using it to inform decisions, in practice availability doesn't in and of itself guarantee usefulness.
In this indicator we focus on the use of such data by individuals—or to support individuals directly in making their decisions—but also recognize its value to a wide range of actors.