Transcript 06_presentation

Consumer health informatics and chronic illness:
gathering requirements in context for a personal
health information management system
JAMES MILEWSKI
MENTOR: YUNAN CHEN, ASSISTANT
PROFESSOR INFORMATICS
Personal Health Information Management
PHIM
Spheres of Influence on PHIM
 Why we engage in PHIM
 PHIM Challenge
 Mediums + Distributed Sources
+ Demands of Health Care
System = Work
 Health Information at Home
Consumer Health Informatics:
Approaching PHIM in the Home
 Medical Informatics/Consumer Health Informatics
CHI: Reaching the patient through computers and
telecommunication systems (Eysenback 2000)
 Sociotechnical approach to explore interwoven networks
of people, tools, routines, sources, and responsibilities of
the patient

Previous Works
 The concept of work in the home (Corbin 1985)
 Privacy of Health: The consumer’s perspective.
(Bartolo 2004)
 The Work of Health Information Management in
the Household (Moen 2005)
 Information Work in the Chronic Experience
(Souden 2008)
Why Diabetes?
 Chronic Illness : 78% of health care expenditure
(Holman 2005)
 Previous work focused on diabetes

Personal understandings of illness among people who have
type 2 diabetes (Hornsten et al 2004)

Harnessing the potential of the Internet to promote
chronic illness self management: diabetes as an example
of how well we are doing (Bull et al 2005)

Health communication and knowledge construction (Ginman
et al 2003)
Purpose
Understand the in-home PHIM process of type 2
diabetes patients and their support group
 Transitions
 Technologies
 Challenges of managing
 How info seeking and tech use change over time
Methodology
 Qualitative study based on in-depth interviews
 Participant Recruitment
 In-home session collecting data from questionnaire,
photos, and interviews
Questionnaire Data
Sources of Diabetes Information
9
8
7
6
5
Internet
Clinic/Provider
Newspaper
4
3
2
1
0
Community
Health Center
Other
12 Patients
with a mean of
11.5 years as a
diabetic
 Understanding of diabetes and its
treatment
*
Excellent 5
4
3
*
2
Poor 1
0
2
4
6
Most Difficult Part of Managing
Your Diabetes
PATIENTS WERE ASKED TO RANK THE FOLLOWING AREAS
WITH 1 BEING THE MOST DIFFICULT
6
Diet
5
Exercise
4
3
Taking
medications
Glucose
Monitoring
Clinic Visits
2
1
0
1
2
3
4
5
37 Photos
Technology: “We’re you
busy yesterday?”
Durable Media
Transcription
Coding
Using Grounded
Theory: Independent
coders sift, chart, and
sort material according
to key issues and
themes until a
consensus is reached
for the codes.
Rely
Eager
Redundant Info
Don’t Track
Memory
Transit
Attitude
Challenges
Regimen
Q: Do you take info
between doctors?
I: No. (3, 22)
Transit
I always feel unfortunate
that they don’t have a
database that the
doctors could feed it in,
the web or something.
(3, 27)
Eager
I just leave, ah, it in my
blood monitor. I have
never charted it (3, 99)
Rely
Preliminary Results and Implications
 Patients with type 2 diabetes and their support
networks



Shift away from paper-based media to various technologies
Rely on IT-enabled diabetes management
Eager for new technologies to augment the home-based PHIM
process
 PHIM system adoption factors
 Perceived usefulness and the perceived ease of use across the
span of the disease
What’s next?
 Cont’d gathering data: recruit 5 more participants
 Extracting software requirements and use case
scenarios
 Prototype implementation and testing