personal health records, design, solution

1. Abdulrahman Jabour
Jim McLaughlin
Maryam Zolnoori

2. ● Patient education leads to the successful treatment of
medical conditions and diseases.
● Reliable health information is obscured by a plethora of
content and a variety of sources.
● The typical learning process is self-directed, has a
general focus
● Learning lacks planning or structure
● Relevance and reliability of sources can vary
Application Domain - The Problem

3. ● Patients with recent diagnosis will likely have
ongoing questions about their disease
● They may rely on the advice of the
physician, or may seek a second opinion
● They may desire to find others with the
disease to learn more
● Often patients turn to the internet but cannot
always expect reliable information
Application Domain - The Patient

4. ● Patients may jump to extreme examples of
their disease
● They may favor an ineffective treatment
option
● They may select and trust disreputable
sources for clinical information
● They may mistakenly confuse their diagnosis
with a disease that has similar symptoms
Application Domain - Pitfalls

5. Places and spaces where patients where
patients will get information about their
disease:
- Doctor/specialist’s office or clinic
- Hospitals
- Libraries
- Internet (through various devices)
- Friends and family
- Their physician or disease specialist
- The privacy of their home
Field Setting - Locations

6. Investigate and uncover:
- Sources of information selected and why
- Flow of information from:
- initial search
- information gathering
- consolidation of content
Field Setting - Expectations

7. Patients were allowed to choose the space
and place that is most comfortable to them
for the contextual interview
- Private home
- School library
- School classroom
Each was asked to bring and use whatever
tools they felt would help them better
understand their diagnosis
Field Setting - Environment

8. Field Setting - Objectives
● How they intend to learn and their process
● Whom they will ask and why
● What other sources they use and why
● The filters for all sources of information
● What structure they apply to their process of
understanding
● Their steps toward education and understanding
● The successes they accomplish and the obstacles they
encounter

9. Field Observations - Methodologies
We observed three recently diagnosed
patients as they explored the education
options available, these contextual inquiry
methodologies were applied:
● Observation
● Partnership (expert/apprentice)
● Think aloud protocol
● Field notes were captured

10. Field Observations - Methodologies
Field observations were
conducted with
sensitivity to the highly
personal nature of
disease, users were
advised to share only
what they were
comfortable sharing.
One participant agreed to have one photograph captured

11. Three diagnoses and the symptoms that
prompted medical attention (as reported by
interviewees):
● Eye infection (pink eye or conjunctivitis)
○ Redness, swelling, watering of the eyes
● Hypothyroidism (underactive thyroid)
○ Fatigue, hair loss, pale skin
● Crohn’s disease
○ Abdominal pain, diarrhea
Field Observations - Cases

12. Field Observations - Limitations
Since the team could not be present during the initial
diagnosis, the patient was asked to walk through their
experience and learnings and continue the process for our
purpose of the contextual inquiry.
In one instance, the patient demonstrated a similar
approach to research a different yet similar disease to the
original diagnosis.
Since each patient was researching new material, an
authentic observation of the work process was captured.

13. Consolidated Flow Model

14. Consolidated Models - Flow
● Difficult to retain information at time of
diagnosis (cognitive load)
● Challenge to capture then remember
questions for next visit
● Delay to receive lab results creates anxiety
● Family advice may interfere with medical
protocol
● Sponsored internet may be misleading

15. Consolidated Sequence Model

16. Consolidated Models - Sequence
Activities and breakdowns
● Learn about diagnosis - anxiety interferes with learning
● Compare symptoms- internet has ad supported and
possibly misleading content.
● Understand medications- technical; doctor or
pharmacist may be unreachable
● Explore treatment options - must capture and remember
questions for next visit
● Consider second opinion - internet, first doctor, family? -
- bias may exist with each

17. Consolidated Models - Artifact
● Prescriptions, lab results and clinic
discharge papers
● Most of the workflow at a personal computer
● Some users/patients will keep notes as they
conduct research
● Some users will print out pdfs found on the
internet
● The team found little relevance of the artifact
model

18. Consolidated Physical Model

19. Consolidated Models - Physical
1. User-Internet
Unlimited access, always on, variable quality, not personalized
2. User-Physician
High quality, low quantity, low accessibility
3. User-Family/Friends
High trust, uncertain quality, high sympathy
4. User-Library (dead tree)
Seldom used, inconvenient, not easy to share
5. User-Lifestyle
Exercise participation varies, nutrition choices self determined

20. Consolidated Cultural Model

21. Consolidated Models - Cultural
● Physician is key influencer
● Internet serves as source to confirm or deny
facts
● Family and friends are key sources of
support
● Online communities can provide connections
that are specific to disease

22. Primary sources of information:
- Physician/specialist
- Web
- Friends Family
- Support groups
Interactions were organized into two main
channels of communication:
- Internet - Non internet
Interpretation - Affinity Diagram

23. Both have equal significance for user
- Internet holds majority of content users
selected, also most misinformation
Conclusion: a digital solution can be designed
to mediate across both domains
- also provide reliable and accurate content
Interpretation - Affinity Diagram

24. Interpretation - Themes
● User/Patient places trust with physician or specialist
and prefers open communication channels
● User/patient will affirm/confirm diagnosis, treatment
plan, medications via web
● Support from friends and family is important but is not
first level source for advice (mostly sounding board)
● Disease support groups are considered at a later time

25. Vision
● Reliable sources for patient education
● Electronic communication between physician
and patient to reinforce interactions
● Initiate access and delivery of information at
diagnosis to close any gaps where
misinformation may enter education process
● Structure to anticipate user process to seek
information and deliver it where it is
expected

26. Primary Requirements
● Facilitate reliable and flexible search within and external
to system
● Safe accessibility to medical history and appointments,
medications
● Secure connectivity to physician’s office, clinic or
hospital providing treatment
● Reliable and customizable information about diagnosis,
treatment, symptoms, causes
● Ability to share information with friends, family,
guardian, care provider

27. Design
● Web based to be accessible by:
- Physician/specialist/nurse at office/clinic
- User/patient
- Guardian or designated caretaker
● Easy and familiar interface that allows
clickable configuration to easily change and
compare information
● Uncluttered presentation of information

28. Consolidated Vision
● Web-based for access by all
stakeholders:physicians, patients, guardians, friends
and family
● Customizable interface to give control of
interface and content to the patient
● Enrollment initiated by doctor’s office for
accuracy of information
● Enrollment at time of diagnosis to provide
best chance to meet knowledge gaps

29. Consolidated Vision Model

30. User Environment Design Model

31. Interactive Prototype - Profile Settings Page, Personal Information

32. Interactive Prototype - Medical History Page, Test Results

33. Interactive Prototype - Patient Education Page, Symptoms Comparison

34. Interactive Prototype - Patient Education Page, Treatment Options

35. Use Scenarios - Part I
Scenario I:
- Day of Initial diagnosis
- Nurse emailed MyHealth Place link
- At home, select link and explore the site
Tasks:
- Locate and review diagnosis
- Review information about disease,
symptoms
- Ask about the next appointment

36. Use Scenarios - Part II
Scenario II:
- 3 weeks later, visited doctor 2 days ago
- Received tests and prescription
- At home, open MyHealth Place
Tasks:
- Locate and review test results
- Review information about meds, side-effects
- Locate resources doctor mentioned at visit

37. Summary of Feedback
1) “I like that the fact that the site would be facilitated by
my doctor, I can trust him”
“Its good to compare the various levels of information, it
helps me learn the terms I don’t understand”
“The Web pages are easy to use”
“I would like my doctor to use this”
2) I like this application. And now I can easily see my
health history and get some information, without going to
different websites and wasting my time.

38. Summary of Feedback
3). If this application provides a section for evaluating
chief complaints, it would be a great help. For example, if
I have a problem in my eyes, I could select eyes and
application can provide me with different diagnosis and
description of diseases, causes and possible treatments.
4) After providing a solution for chief complaints, if
application could help with me to find the nearest
Doctors or hospital with type of insurance they accept
and estimated cost, it will be great.

39. Summary of Feedback
5) It will be great, if application could connect to my
insurance company and I could get information related to
my bills, and other insurance related to my insurance
coverage.
6) It was great, if application can provide me with
alternative solutions for reducing my medical costs.
7) It is great, if software can provide me with some
solution for alternative medicine such as herbal
treatment for my disease. And I could see opinion of
other patients and effects of herbal treatment on their
disease.