Patient-Centered Computing:Are the patients ready? Are we? Patti Brennan, RN, PhD University of Wisconsin-Madison Preparation of these remarks was supported by grants from the Agency for Health Care Policy and Research, the National Library of Medicine, Intel Corporation and the Moehlman Bascom Professorship
Consumer Health Informatics What it is, and what it is not!
Consumer Health Informatics: Delivering informative, relevant Information directly to the individual
Consumer Health Informatics Innovations • Patient Portals • PatCIS (CPMC) • Patient Gateway (Partners) • MyAurora.com (Aurora Health Systems) • Health-related Web Sites • Remote sensing and monitoring • Device-based assessment & coaching (beepers, telephones) • Planning analysis and decision support tools
CHI version 1.0 “Push” information into the lives of patients
CHI version 2.0 Information, communication &companionship
Critical Questions • How does consumer health information facilitate and/or interfere with the clinical health care process? • Are informatics professionals adequately trained in the patient perspective or is systems development training overly grounded in the provider perspective?
How does consumer health information facilitate and/or interfere with the clinical health care process?
How does consumer health information facilitate and/or interfere with the clinical health care process? The view from the industry:
When and where doeshealth care happen? The Patient’s view
The Contexts of Care • Living Environment • Homes • Communities • Social Environments • Families • Cultural Groups • Psychological Environments • Illness representations • Human Information Processing • Technological Environments • Broadband, Telecom, household • Health Services Environments • Care delivery
How does consumer health information facilitate and/or interfere with the clinical health care process? • Cognitive • Provides content • Behavioral • Builds skills • Motivational/attitudinal • Promotes peer support • Logistics • Storage and organization of content • Management of contacts • Reminders & Schedulers
A short view on the reality of logistics • The typical lay person in our study… • Views their health better than that of their household members • Receives health information from about 10 sources • Manages information for the household
Are informatics professionals adequately trained in the patient perspective, or is systems development training overly grounded in the provider perspective?
Challenges in CHI design • Who really is the user? • Patient vs. carepartner • How does the designer know the user? • The “reflexive user” • users are just like designers • The “configured user” • design encourages some forms of use, not others • The “projected user” • design based on users with specific tastes, competencies, motives, aspirations, political prejudices, roles • What is the role of the user?
Current views on patients • Flat and silent • Provider-centric • Institutional accountability • Professional responsibility • Systems orientation • Task focused
Patients Almost! Existing skills and workable strategies Technology assessment Expectation of empowerment Medical Informaticts NO! Incentives to optimize the clinical enterprise Models and design strategies do not scale beyond organizations Philosophical alignment with clinical disciplines Readiness assessment
Contact us! firstname.lastname@example.org healthsystems.engr.wisc.edu
Most Important Nurse Caring Behaviors • Know what they are doing • Make me feel someone is there • Know how to take care of me • Know how to handle equipment • Know when to call MD • Do what they say they will do
Top Patients’ Preferences(Rank Order) • Compassionate • Being Kind • Maintain Confidentiality • Trust • Get Answers to Questions • Being concerned for total wellbeing
Top Nurses’ Preferences(Rank Order) • Make patient feel as an individual, not a room number • Confidence • Non-judgmental • Trust
What do patients want from nurses? • Motivate, monitor, mentor and mend • Information broker • Service referral • Care!