The collaborative edge: patient empowerment for vulnerable populations

Int J Med Inform. 2003 Mar;69(2-3):185-90. doi: 10.1016/s1386-5056(02)00130-2.


Objective: The problems with access to care and the special needs for educational outreach for disadvantage or vulnerable populations of patients require innovation. This paper describes Baby CareLink use of information technology to support communication, consultation, and collaboration among colleagues as well as with patients, their families, and community resources.

Methods: In response to the educational, emotional and communication needs of parents of premature infants and the clinicians who care for the infants and support the families, we developed Baby CareLink, a secure collaborative environment. Baby CareLink provides a nurturing environment where parents, even though remote from the Neonatal Intensive Care Unit, can actively participate in decisions surrounding their baby's care.

Results: In a southeastern hospital serving a mostly Medicaid population in a rural setting, more than 300 parents have used Baby CareLink more than 11000 times during the past year. Despite the common wisdom that Medicaid families do not have access to the Internet, approximately 85% of the parents access Baby CareLink from home, at work, from the library or other public access point. The median use of Baby CareLinks from outside the hospital by parents is 17 separate sessions. In a city hospital in the midwestern US which exclusively serves a Medicaid population, experience has been equally encouraging. More than 70 parents have initiated more than 600 secure sessions with Baby CareLink. In contrast to the rural hospital, only 35% of sessions have been initiated outside the hospital.

Discussion: Experience with Baby CareLink suggests that families from all walks of life will use and benefit from collaborative tools that keep them informed and involved in the care of their children. The most significant barrier to wider deployment is bandwidth limitations into the homes of most families. The care of premature infants is a great example of an area where medical knowledge and ability has grown dramatically, and where information and communication technology holds enormous potential.

MeSH terms

  • Aftercare
  • Female
  • Health Services Accessibility / organization & administration*
  • Humans
  • Infant Care / organization & administration*
  • Infant Care / standards
  • Infant, Newborn
  • Infant, Premature*
  • Intensive Care Units, Neonatal
  • Internet*
  • Male
  • Patient Satisfaction
  • Program Development
  • Program Evaluation
  • Telemedicine
  • User-Computer Interface