User Community

Overview

Though its practice only touches a small segment of the health sector, the vaccination of young, school-age children has far-reaching effects on the general population. Failure to vaccinate cannot only be grounds for denial of entry at many public schools, but failure to do so can endanger lives, and even cause premature death, when outbreaks of vaccine-preventable diseases rage out of control. Thus, vaccination and immunization information may be of interest to the following parties:

• Health officials and medical professionals

• Education administrators, teachers, students, and parents of students

• Policy analysts, legislators, and other citizen interest groups

• Researchers and nonprofit groups

• Journalists

• General public

Data Requirements

The VaxStats project anticipates these groups will have the following requirements from a vaccination data repository.

User Group	Data Access	Data Format	Data Analysis
Department of Health	API, File download, GUI browsing	Plain text, non-encoded CSV	See full picture of vaccination data for their area
School Administrator	File download, GUI browsing	Open formats, not specific	Track school vaccination data over time, and compare data from surrounding districts
Policy Analyst	API, File download, GUI browsing	Plain text, non-encoded CSV	View historical and multi-region data, as well as visualize it
Journalist	File download, GUI browsing	Open formats, not specific	Find data easily, read data descriptions, and visualize data
Epidemiologist	API, File download, GUI browsing	Plain text, non-encoded CSV	Load data into statistical processing software and compare with other data
General Public	GUI browsing	Open formats, not specific	Find and browse data quickly and easily

Data Repository

Additionally, because many of these user communities may already be accustomed to retrieving local data from an open government data portal, administered by their state, city, or county, we do not anticipate building a distinct repository for this data. Instead, VaxStats would contribute curated data to an already existing and available repository, such as data.wa.gov, which is built on Socrata. Not only does VaxStats believe this would contribute to better findability and accessibility for vaccination data, it would serve as secure hosting and storage for the data in the long term. Using a well-known repository with other types of data also has the added benefit of potentially displaying related datasets to those seeking vaccination data, increasing the likelihood of reuse and encouraging interoperability.

User Community Context

The user community of those interested in vaccination data can be complex, so it helps to begin with some context before detailing goal-oriented user stories.

Legal Constraints

First, each U.S. state has differing vaccination requirements and public health administrative structures--plus, some use slightly different recommended vaccination schedules (Idaho’s, Oregon’s, and Washington’s), though many stick to the standardized schedules published by the Centers for Disease Control (CDC). The VaxStats project focuses on just the Pacific Northwest (PNW), defined as the states of Washington, Oregon, and Idaho, but even across these three states, laws vary. Additionally, some states currently have proposed changes pending to their immunization laws. For a brief overview of the PNW’s vaccination laws, see the legislative overview.

Privacy Constraints

Second, because vaccination data is inextricably linked to medical data and because vaccination data is often collected by schools, many patient and student protections apply such as HIPAA and FERPA. These protections often result in already-aggregated data, as well as in inaccessible data formatting.

Interoperability Constraints

Third, due to the issues above, no state is producing or releasing vaccination in exactly the same way. VaxStats will cover this more thoroughly when describing cascading quality tiers of vaccination data.

User Stories

User stories capture the the goals of the various user communities and stakeholders outlined above, as well as what potential depositors wish to accomplish when contributing data to VaxStats. These stories guide the repository’s documentation, policies, features, and curation efforts, setting the tone for what VaxStats hopes to achieve, and who it intends to serve.

Users Seeking Data

Goal	User Story
Find data about vaccination exemptions	“As a parent, I want to know what the vaccination exemption rate is in my county.”
Find data about vaccination requirements and recommendations	“As a policymaker, I want to better understand what other states in the PNW require for vaccination.”
Find data about multiple types of vaccines	“As a health official, I want to know which vaccines are waived most frequently.”
Download data in machine-readable formats	“As a journalist, I want to analyze a lot of data at once in order to tell a data-driven story about a recent measles outbreak in my area.”

Users Depositing Data

Goal	User Story
Transform data into an acceptable format for deposit	“As a public health official, I want to take aggregated data in PDF format, and produce a raw dataset appropriate for deposit.”
Protect sensitive data before placing in public repository	“As a local government employee, I want to ensure that any data released to the repository won’t compromise personally identifiable information of citizens.”
Know how datasets will be stored, secured, and accessed in the future	“As a researcher, I want to know if this data is secure, and if it will be available persistently in the future.”

Motivations & Future Goals

While VaxStats strives to be a data-driven source for information about vaccination, the repository also actively advocates for better vaccination data to be made available to the public. Not only does the general public deserve to know immunization and exemption rates for their area, the VaxStats team believes up-to-date, accessible, and reusable data can improve community awareness about the importance of vaccination from vaccine-preventable diseases, and can also serve as an early indicator of disease outbreak risk.

Currently, the Pacific Northwest states of Idaho, Oregon, and Washington release vaccination data in varying levels of quality, but even the best available datasets could stand to be improved.

At a minimum, VaxStats advocates for vaccination data to be:

• Fully released as raw, non-transformed files

• Available in machine-readable format

• Contextualized with descriptions, metadata, and supporting documentation