james milewski mentor: yunan chen, assistant professor informatics consumer health informatics and...

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JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for a personal health information management system

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Page 1: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

JAMES MILEWSKIMENTOR: YUNAN CHEN, ASSISTANT PROFESSOR

INFORMATICS

Consumer health informatics and chronic illness: gathering requirements in context for a personal health information management

system

Page 2: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

Personal Health Information ManagementPHIM

Why we engage in PHIM

PHIM Challenge Mediums + Distributed Sources

+ Demands of Health Care System = Work

Health Information at Home

Spheres of Influence on PHIM

Page 3: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

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

Page 4: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

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)

Page 5: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

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)

Page 6: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

Purpose

Understand the in-home PHIM process of type 2 diabetes patients and their support group

TransitionsTechnologiesChallenges of managingHow info seeking and tech use change over

time

Page 7: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

Methodology

Qualitative study based on in-depth interviews Participant Recruitment In-home session collecting data from

questionnaire, photos, and interviews

Page 8: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

Questionnaire DataSources of Diabetes

Information

Page 9: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

12 Patients with a mean of 11.5 years as a diabetic

Understanding of diabetes and its treatment

Page 10: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

PATIENTS WERE ASKED TO RANK THE FOLLOWING AREAS WITH 1 BEING THE MOST DIFFICULT

Most Difficult Part of Managing Your Diabetes

Page 11: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

Technology: “We’re you busy yesterday?” Technology: “We’re you busy yesterday?” Durable Media Durable Media

37 Photos

Page 12: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

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

Page 13: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

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

Page 14: JAMES MILEWSKI MENTOR: YUNAN CHEN, ASSISTANT PROFESSOR INFORMATICS Consumer health informatics and chronic illness: gathering requirements in context for

What’s next?

Cont’d gathering data: recruit 5 more participants

Extracting software requirements and use case scenarios

Prototype implementation and testing