Personal and Family Health History: Follow Up Survey Details and Resources

Survey Design

The All of Us Research Program has fielded multiple surveys to collect personal and family health history from participants. The currently fielded survey is called the Personal and Family Health History survey. It replaces two surveys that were previously fielded - the Personal Medical History survey and the Family Health History survey. The Personal and Family Health History Survey includes 606 items including follow ups developed specifically for use within the All of Us Research Program.

The majority of items in the currently fielded survey re-use concepts from the retired surveys so that data from all three sources can be combined. 

Scoring Considerations for the Personal Medical History Survey

The Personal and Family Health History survey includes categorical items specific to medical condition diagnoses and can not be scored. 

Sample Eligibility

The survey is considered a “follow-up” survey and is available to all All of Us participants after completion of the Basics, Overall Health, and Lifestyle surveys. Note: Participants who completed the retired Personal Medical History and Family Health History surveys are not asked to complete the Personal and Family Health History survey. Participants who completed one of the surveys, but not both are invited to complete the Personal and Family Health History survey. The Personal and Family Health History survey response data is available in both the Registered and Controlled Tier CDRs.

For more information about survey samples and releases, please see [Introduction to All of Us Survey Collection and Data Transformation Methods]

Data Model and Privacy Protection Considerations

All survey codebook variables (e.g., source codes) are deposited into the OMOP Common Data Model’s observation table and stored as concepts in an All of Us specific “PPI” vocabulary. This vocabulary is both browsable and downloadable via Athena, the online OMOP repository - for a listing of concepts specific to the Personal and Family Health History survey, please see this Athena entry. For a listing of concepts specific to the previously fielded Personal Medical History survey, please see this Athena entry. For a listing of concepts specific to the previously fielded Family Health History survey, please see this Athena entry.

Note about ds_survey table: Researchers using the Dataset Builder to select and import concepts from this survey domain into a notebook will work with the data in the ds_table where all three surveys have been merged into the Personal and Family Health History survey structure. See the “How to Work with All of Us Survey Data” featured workspace’s Personal and Family Health History notebook for more details. 

Self-reported personal and family health history data have been collected through different surveys over the years. The currently fielded version of the survey is called the Personal and Family Health History survey. It replaces two surveys that were previously fielded instead but have now been retired - the Personal Medical History survey and the Family Health History survey. Beginning with the most recent CDR release (version 7), data from the currently fielded survey were added to the dataset alongside data from past versions.

The Cohort and Dataset Builder tools allow researchers to select data from all these survey versions at once rather than having to select version by version. When using the tools, these data are imported into the analysis notebook via a locally built table referred to as “ds_survey” table. Currently, extraction of select concepts from past survey versions – specifically prefer not to answer, skip, and none of the above responses collected in the original Personal Medical History survey – are not represented in the tools or ds_survey table. We are working to address this issue in a future release. In the meantime, researchers may use the observation table to extract these data and combine with their datasets by using the following queries.

To return all responses in a format similar to the tools or ds_survey table, use the following SQL query:

SELECT person_id,

observation_source_value as question,

observation_source_concept_id as question_concept_id,

value_source_value as answer,

value_source_concept_id as answer_concept_id,

observation_datetime as survey_datetime

FROM ‘{DATASET}.observation’

WHERE observation_source_concept_id IN (43529272, 836807)

To return only skipped responses, add the following line to the end of the SQL query above:

AND value_source_value like '%PMI%'

Select items from this survey domain have been either suppressed or generalized within the Registered and Controlled Tiers. Please see below for these specifics, which are also captured in the All of Us survey codebook and How All of Us Protects Participant Privacy.

Registered and Controlled Tier Privacy Considerations for the Personal and Family Health History Survey

Registered and Controlled Tier Privacy Considerations for the Retired Personal Medical History Survey

Registered and Controlled Tier Privacy Considerations for the Retired Family Health History Survey