title: Patient-centered design of an information management module for a personally controlled health record.
abstract: BACKGROUND
  The development of health information technologies should be informed by iterative experiments in which qualitative and quantitative methodologies provide a deeper understanding of the abilities, needs, and goals of the target audience for a personal health application.
  
  
  OBJECTIVE
  Our objective was to create an interface for parents of children with attention-deficit hyperactivity/disorder (ADHD) to enter disease-specific information to facilitate data entry with minimal task burden.
  
  
  METHODS
  We developed an ADHD-specific personal health application to support data entry into a personally controlled health record (PCHR) using a three-step, iterative process: (1) a needs analysis by conducting focus groups with parents of children with ADHD and an heuristic evaluation of a prerelease version of a PCHR, (2) usability testing of an initial prototype personal health application following a "think aloud" protocol, (3) performance testing of a revised prototype, and (4) finalizing the design and functionality of the ADHD personal health application. Study populations for the three studies (focus groups and two usability testing studies) were recruited from organizations in the greater Boston area. Study eligibility included being an English- or Spanish-speaking parent who was the primary caretaker of a school-age child with ADHD. We determined subjects' health literacy using the Test of Functional Health Literacy in Adults (TOFHLA). We assessed subjects' task burden using the National Aeronautics and Space Administration (NASA) Task Load Index. To assess the impact of factors associated with the time spent entering data, we calculated Pearson correlation coefficients (r) between time on task and both task burden and subject characteristics. We conducted t tests to determine if time on task was associated with successful task completion.
  
  
  RESULTS
  The focus groups included three cohorts: 4 Spanish-speaking parents with diverse health literacy, 4 English-speaking parents with lower health literacy, and 7 English-speaking parents with higher health literacy. Both the initial usability testing cohort (n = 10) and the performance-testing cohort (n = 7) included parents of diverse health literacy and ethnicity. In performance testing, the prototype PCHRs captured patient-specific data with a mean time on task of 11.9 minutes (SD 6.5). Task burden experienced during data entry was not associated with successful task completion (P = .92). Subjects' past computer experience was highly correlated with time on task (r = .86, P = .01), but not with task burden (r = .18, P = .69). The ADHD personal health application was finalized in response to these results by (1) simplifying the visual environment, (2) including items to support users limited by health literacy or technology experience, and (3) populating the application's welcome screen with pictures of culturally diverse families to establish a personal family-oriented look and feel.
  
  
  CONCLUSIONS
  Our patient-centered design process produced a usable ADHD-specific personal health application that minimizes the burden of data entry.
authors.affiliation: Department of Pediatrics, Boston Medical Centre & Boston University School of Medicine, Boston, 02118, USA. colin.sox@bmc.org
authors.forename: Colin M
authors.initials: CM
authors.lastname: Sox
authors.forename: William M
authors.initials: WM
authors.lastname: Gribbons
authors.forename: Beth A
authors.initials: BA
authors.lastname: Loring
authors.forename: Kenneth D
authors.initials: KD
authors.lastname: Mandl
authors.forename: Rosanna
authors.initials: R
authors.lastname: Batista
authors.forename: Stephen C
authors.initials: SC
authors.lastname: Porter
mesh_terms: D000328:Adult; D001289:Attention Deficit Disorder with Hyperactivity / Q000188:drug therapy / Q000628:therapy*; D001900:Boston; D002648:Child; D003071:Cognition; D004522:Educational Status; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D057220:Health Literacy; D055991:Health Records, Personal; D006801:Humans; D019451:Information Management; D008297:Male; D009042:Motivation; D020380:Needs Assessment; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology
references.citation: J Biomed Inform. 2005 Feb;38(1):75-87
references.pmid: 15694887
references.citation: J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6
references.pmid: 16357345
references.citation: J Am Med Inform Assoc. 2005 Jan-Feb;12(1):47-54
references.pmid: 15492031
references.citation: J Med Internet Res. 2009 Apr 29;11(2):e14
references.pmid: 19403467
references.citation: J Am Med Inform Assoc. 2004 Nov-Dec;11(6):458-67
references.pmid: 15298999
references.citation: N Engl J Med. 2008 Apr 17;358(16):1732-7
references.pmid: 18420506
references.citation: J Dev Behav Pediatr. 2004 Feb;25(1):41-7
references.pmid: 14767355
references.citation: Pediatrics. 2005 Oct;116(4):e512-7
references.pmid: 16199679
references.citation: J Am Med Inform Assoc. 2008 Jan-Feb;15(1):1-7
references.pmid: 17947615
references.citation: Pediatrics. 2000 May;105(5):1158-70
references.pmid: 10836893
references.citation: J Gen Intern Med. 1995 Oct;10(10):537-41
references.pmid: 8576769
references.citation: J Am Med Inform Assoc. 2002 Mar-Apr;9(2):171-80
references.pmid: 11861632
references.citation: Patient Educ Couns. 1999 Sep;38(1):33-42
references.pmid: 14528569
references.citation: J Pediatr Psychol. 2003 Dec;28(8):559-67
references.pmid: 14602846
references.citation: J Behav Health Serv Res. 2003 Oct-Dec;30(4):462-9
references.pmid: 14593669
references.citation: BMC Med Inform Decis Mak. 2007 Sep 12;7:25
references.pmid: 17850667
references.citation: Pediatrics. 2001 Oct;108(4):1033-44
references.pmid: 11581465
references.citation: J Med Internet Res. 2009 Oct 27;11(4):e44
references.pmid: 19861298
references.citation: Stud Health Technol Inform. 2004;107(Pt 1):187-91
references.pmid: 15360800
references.citation: J Med Syst. 1998 Apr;22(2):95-102
references.pmid: 9571516