A User Centered Personal Health Record:
The design and development of the Shared Care Plan
Dawn Gauthier, MIS
[email protected]
Web Usability Designer
PeaceHealth
Background
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Initial effort funded by a RWJ Pursuing Perfection grant
Aligned with the IOM’s 6 Aims for improvement and 10 rules for redesign
Patient-centered healthcare = user-centered design
Originally focused on community chronic disease management
Background, con’t
Design goals of the Shared Care Plan:
1. Facilitate patients’ interactions with the health care system to support the
virtual Care Team concept, planned care, and to ensure “nothing about me
without me” from the patient perspective.
2. Offer patients a tool that fosters a sense of responsibility for their own health
and to learn about and practice principles of self-management (such as
maintaining a medication list), encouraging educated and engaged patients.
3. Provide a tool that enables patients to feel safer because they are informed
and in control.
4. Give patients access to their clinical information from multiple community
health care systems so they may organize it into a single meaningful lifelong
personal health record and then make appropriate parts of that record
available to those who need it at the patient-owner’s discretion.
How we involved patients
User Centered Design: A philosophy and a process in which the tasks, needs, wants
and limitations of the end user of a system (in this case, patients) are given extensive
attention at each stage of the design process.
Key end user rights1:
• The right of people to be considered superior to technology.
• The right of empowerment.
• The right to simplicity.
• The right of people to have their time respected.
1Jakob
Nielsen's Alertbox, June 27, 2005: Usability: Empiricism or Ideology? http://www.useit.com/alertbox/20050627.html
Mainly, we figured out what tasks patients were
actually trying to accomplish, and observed how
they went about doing them:
Ø Listen to patients tell their stories
Ø Ask questions about why they went about doing
something a certain way
(This is called “user – patient - research”)
User Research
Several different ways:
• One-on-one contextual interviews (best)
• Usability testing design ideas and prototypes
• Patient focus groups
• Surveys
Make sure you have a range of representation:
• Patients who most successfully navigate the health care system
• Patients who are healthy and rarely use the system
• Patients who fully understand what you are trying to do (may be
health care professionals themselves)
• Patients who have no idea what you are trying to do
Task Analysis
Next: distill user research into a list of all tasks observed.
• Prioritize based on how important each task is to users (patients)
• Helps define the scope and focus of product
• Serves as guardrails to design and development work
Ø Decisions are made by referencing user data, rather than relying on opinions
and assumptions
Ø Design work is focused on how best to support the identified tasks and
problem solving.
Task: I need to know what the generic name of my
medication is.
Task: I need to know the name of the sleeping med
I took 2 years ago because I want to take it again.
Task: I need to quickly communicate my health
information to a new doctor.
Clinician Task: I need to know whether patients really
don’t have any allergies, or if they just haven’t filled
out that section.
Challenges
Privacy and Security:
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How can patients safely allow access to their private health care
information over the Internet?
How could this information still be shared in an emergency situation?
How would clinicians log in?
How will usage be audited?
Challenges
Health literacy:
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How can the knowledge gap be mitigated?
How can complex concepts be explained to patients?
How can segmentation be achieved?
Ø Drop-in lab for anyone to come and practice with an expert.
Ø Presentations at community centers, churches, etc.
Challenges
Meeting Expectations:
•Ability of clinicians to access the PHR raised patient expectations
•Lack of critical mass of patients’ entire Care Team using the Shared Care Plan
made maintaining it less worth their time
•Some patients measured the Shared Care Plan’s value by how much their
participating clinicians seemed to be using it
ØI believe patients will understand the value of PHRs only when they start
actually seeing them significantly improving their experiences within the health
care system. (e.g. not repeating their med lists verbally, not having to fill out
repetitive forms, etc.)
ØIn other words, patients won’t value PHRs until clinicians do (and use them!)
Looking Forward
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New version of the Shared Care Plan built with latest technology just
launched
Enables more integration with data sources, such as HealthVault
Version is being piloted in New Zealand and Sweden, among others
How should PeaceHealth’s Patient Portal interact with this PHR and others?
No shortage of great ideas from patients to design and build!
Resources
Full source code and complete documentation of the
original Shared Care Plan available here:
http://www.peacehealth.org/scp