title: An interactive portal to empower cancer survivors: a qualitative study on user expectations.
abstract: OBJECTIVE
  Portals are increasingly used to improve patient empowerment, but are still uncommon in oncology. In this study, we explored cancer survivors' and health professionals' expectations of possible features of an interactive portal.
  
  
  METHODS
  We conducted three focus groups with breast cancer survivors (n = 21), two with lung cancer survivors (n = 14), and four with health professionals (n = 31). Drafts of possible features of an interactive portal were presented as static screenshots: survivorship care plan (SCP), access to electronic medical record (EMR), appointments, e-consultation, online patient community, patient reported outcomes (PROs) plus feedback, telemonitoring service, online rehabilitation program, and online psychosocial self-management program. This presentation was followed by an open discussion. Focus groups were audiotaped, transcribed verbatim, and data were analyzed using content analysis.
  
  
  RESULTS
  Important themes included fulfillment of information needs, communication, motivation, quality of feedback, and supervision. Cancer survivors were primarily interested in features that could fulfill their information needs: SCP, access to their EMR, and an overview of appointments. Health professionals considered PROs and telemonitoring as most useful features, as these provide relevant information about survivors' health status. We recommend to minimally include these features in an interactive portal for cancer survivors.
  
  
  CONCLUSIONS
  This is the first study that evaluated the expectations of cancer survivors and health professionals concerning an interactive portal. Both groups were positive about the introduction of such a portal, although their preferences for the various features differed. These findings reflect their unique perspective and emphasize the importance of involving multiple stakeholders in the actual design process.
authors: Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands.
authors: Wilma
authors: W
authors: Kuijpers
authors: Wim G
authors: WG
authors: Groen
authors: Romy
authors: R
authors: Loos
authors: Hester S A
authors: HS
authors: Oldenburg
authors: Michel W J M
authors: MW
authors: Wouters
authors: Neil K
authors: NK
authors: Aaronson
authors: Wim H
authors: WH
authors: van Harten
mesh_terms: D001943:Breast Neoplasms / Q000523:psychology*; D003142:Communication; D057286:Electronic Health Records; D005260:Female; D017144:Focus Groups; D006266:Health Education / Q000379:methods*; D006801:Humans; D057226:Information Seeking Behavior; D020407:Internet; D008875:Middle Aged; D036301:Qualitative Research; D012648:Self Care; D015996:Survival Rate; D017741:Survivors / Q000523:psychology