BRINGING THE FIELD INTO FOCUS: USER-CENTERED DESIGN OF A PATIENT EXPERTISE LOCATOR

Andrea Civan Hartzler, David McDonald, Chris Powell, Meredith Skeels, Marlee Mukai, & Wanda Pratt

UNIVERSITY of WASHINGTON

Patient expertise*

Medical expertise

Understanding & treating disease

*Civan & Pratt. Threading together patient expertise. AMIA’07, 140-144

*Hartzler & Pratt. Managing the person side of health: Patient expertise differs from the expertise of clinicians in topic, form, & style. JAMIA, under review.

Patient expertise

Managing self-care, home, work, emotions, & social relationships in the context of illness

Patient expertise sharing

Health-related social media User broadcasts a request & garners responses Surge in use, but who knows what?

Enhance by profiling users -‘expertise locator’

Design challenges Meeting users’ needs & practices ‘Critical mass’ problem

Patient expertise locating*

Identification strategies

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Selection criteria

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

IdentificationWho knows what?

SelectionWho do I approach?

* Civan, McDonald, Unruh, Pratt. Locating patient expertise in everyday life. Group’09, 291-300.

Explore the design space of health-related social media

to facilitate patient expertise locating

Goal

User-centered approach

Phase I. Initial design

Simplicity: low fidelity mock ups for Q&A forum Simulation: leveraged content from ‘Yahoo!

Answers’ informed directly by field study

Answers serve as artifactsIdentification

strategies

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Selection criteria

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Detailed profiles

Use case

Lily

Identification strategies:

Who knows what?

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Selection criteriaWho do I

approach?

1. Source knowledge

2. Transparency

3. Connection to cancer

4. Availability

5. Strength of social tie

6. Lifestyle & interests

Phase II. Focus Group #1

Goals Is a patient expertise locator a useful design

direction? How can we enhance the design?

2-hr session with 4 breast cancer survivors Storyboarding-> describe initial design Discussion -> design enhancements

Group #1 Feedback

Helps you find someone who is “really in your niche” (P1)

Refine profiles Star awards Counter on connections

Help users sort & filters profiles Support identification beyond artifacts

“Is there any one person who is connected to all these people?”(P1) (e.g., gatekeeper)

Groups: e.g., other teachers in Seattle (P3) Suggest peers

Phase III. Redesign

Higher fidelity mock ups Refined profiles Profile sorting/filtering More identification

strategies

Identification strategies

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Identification strategies

Who knows what?

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Identification strategies

Who knows what?

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Identification strategies

Who knows what?

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Identification strategies

Who knows what?

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Identification strategies

Who knows what?

1. Personal networks

2. Gate keeping

3. Grouping

4. Artifacts

5. Unsolicited advice

Phase IV. Focus Group #2

2-hr session with new group of 4 breast cancer survivors Storyboarding-> describe redesign Discussion -> design enhancements

Group #2 Feedback

Support all identification strategies They all “intermesh to make things easier for you”

(P7)

Design for delicate trade-offs Close vs. distant social ties “[My friends] were all very sweet, but in- effectual in

that situation to help me”(P6) Privacy vs. disclosure “I want to talk with someone who is closer to my story &

don’t want it out for the whole group to see”(P5) Profuse vs. tempered collaboration

Don’t want to get “bombarded” (P5) Volunteer to serve as a gatekeeper Give others “permission to contact you” (P5)

Conclusion

Focus groups facilitate design work Linking expertise locating practices to design Exposing important trade-offs

Patients are a valuable source of expertise Patients need help locating expertise from peers Expertise locator is a promising design direction

THANK YOU!

Andrea Civan Hartzler andreah@uw.edu

AcknowledgementsOur participantsiMed research groupNLM #R01LM009143

CitationHartzler A, McDonald D, Powell C, Skeels M, Mukai M, Pratt W. Bringing the field into focus: User-centered design of a patient expertise locator. Proc. CHI’10, p. 1675-1684.

UNIVERSITY of WASHINGTON

Development corpus

Build it and they will come? We thought maybe not… Collect BC-related Q&A threads* (hundreds) Represent network of interaction Select cluster of interesting, interconnected

interaction Represents users (N=38), questions (N=90), answers

(N=406) Pull terms from user’s answers for ‘knowledge cloud’ Fill out profiles with personas based on our work

* Zhang & Ackerman. Searching for expertise in social networks. Group’05, 71-80.

Privacy & Security

Patients self-police in online communities Comments Mark as ‘spam’ “Report” this person

Locator could help identify spammers Patients desire control in privacy

management

Usefulness of patient expertise locator

Finding someone who is “really in your niche” (P1)

“I have to go to that particular forum ... go through and read all of the stuff to find someone that matched … so there is no way to go search and say find ‘somebody that knows this’. I think that is something that that one [expertise locator] would help.” (P3)

Usefulness: Forum vs. Locator

Q&A forum Patient Expertise LocatorGeneral information• Statistics and overviews• New users

“What’s good for Q&A is a question that’s going to have multiple answers ... so you can get all of their answers and decide which ones to use or not.”

Specific information• More serious/urgent issues • Detailed

“So it’s like finding specific similarities, the people finder [expertise locator] helps you do that- find someone who’s really in your niche. “

“I have to go to that particular forum ... go through and read all of the stuff to find someone that matched … so there is no way to go search and say find ‘somebody that knows this’. I think that is something that that one [expertise locator] would help.”