“Parent-reported” data means that the surveys are completed by a parent, guardian, or
other adult familiar with the child’s health. This differs from electronic medical record data or other clinical
data reported by hospitals, clinicians, or administrators. Data from parents and caregivers are critical to
having a full understanding of the broad spectrum of child health. Questions included in the survey instrument
are deemed appropriate to be reported by parents. Data from parents, who know their children better than anyone,
are critical to having a full understanding of the broad spectrum of child health. Below are relevant
publications on the validity of parent response:
1. Gordon NP, Mellor, RG. Accuracy of parent-reported information for estimating
prevalence of overweight and obesity in a race-ethnically diverse pediatric clinic population aged 3 to 12. BMC
Ped. 2015 15(5). DOI: 10.1186/s12887-015-0320-0.
2. Gutierrez SJ, Fagnano M, Wiesenthal E, Koehler AD, Halterman JS. Discrepancies
between medical record data and parent reported use of preventive asthma medications. J Asthma. 2014 May; 51(4):
446–450. 2014 Jan. 30. DOI: 10.3109/02770903.2013.878351
3. Porter SC, Forbes P, Manzi S, Kalish LA. Patients providing the answers: narrowing
the gap in data quality for emergency care. Qual Saf Health Care. 2010 May 27. [Epub ahead of print] PubMed
PMID: 20511242.
4. Bourgeois FT, Porter SC, Valim C, Jackson T, Cook EF, Mandl KD. The value of
patient self-report for disease surveillance. J Am Med Inform Assoc. 2007
Nov-Dec;14(6):765-71. Epub 2007 Aug 21. PubMed PMID: 17712092; PubMed Central
PMCID: PMC2213481.
5. Porter SC, Kohane IS, Goldmann DA. Parents as partners in obtaining the
medication history. J Am Med Inform Assoc. 2005 May-Jun;12(3):299-305. Epub 2005
Jan 31. PubMed PMID: 15684127; PubMed Central PMCID: PMC1090461.
6. Porter SC. Patients as experts: a collaborative performance support system.
Proc AMIA Symp. 2001:548-52. PubMed PMID: 11825247; PubMed Central PMCID: PMC2243331.
7. Porter SC, Silvia MT, Fleisher GR, Kohane IS, Homer CJ, Mandl KD. Parents as
direct contributors to the medical record: validation of their electronic input.
Ann Emerg Med. 2000 Apr;35(4):346-52. PubMed PMID: 10736120.
8. Porter SC, Mandl KD. Data quality and the electronic medical record: a role
for direct parental data entry. Proc AMIA Symp. 1999:354-8. PubMed PMID:
10566380; PubMed Central PMCID: PMC2232794.