Use of a web-based portal to return normal individual research results in Early Check: Exploring user behaviors and attitudes.
Clin Genet
; 103(6): 672-680, 2023 06.
Article
in En
| MEDLINE
| ID: mdl-36960544
ABSTRACT
Early Check is a voluntary, large-scale expanded newborn screening study in North Carolina that uses a self-directed web-based portal for return of normal individual research results (IRR). Little is known about participant perspectives in using web-based portals to receive IRR. This study explored user attitudes and behaviors within the Early Check portal using three methods:
(1) a feedback survey available to the consenting parent of participating infants (typically mothers), (2) semi-structured interviews conducted with a subset of parents, and (3) Google Analytics. During an approximate 3-year period, 17 936 newborns received normal IRR and there were 27 812 visits to the portal. Most surveyed parents reported viewing their baby's results (86%, 1410/1639). Parents largely found the portal easy to use to get results, and helpful in understanding the results. However, 10% of parents said it was difficult to find enough information to understand their baby's results. In Early Check, providing normal IRR via the portal made a large-scale study practical, and was highly rated by most users. Return of normal IRR may be particularly amenable to web-based portals, as the consequences to participants from not viewing results are modest, and the interpretation of a normal result is relatively straightforward.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Parents
/
Mothers
Type of study:
Qualitative_research
Limits:
Female
/
Humans
/
Infant
/
Newborn
Language:
En
Journal:
Clin Genet
Year:
2023
Document type:
Article
Affiliation country:
United States