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 1.How does consumer health information facilitate and/or interfere with the clinical health care process? 2.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?

First, one must define the clinical 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 does health 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

Readiness assessment 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

Contact us! 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

Patients’ (and Nurses’) Ratings

Nurses’ (and Patients’) Ratings

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!

The contemporary context of health care