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, *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 Identification Who knows what? Selection Who do I approach? * Civan, McDonald, Unruh, Pratt. Locating patient expertise in everyday life. Group’09,

Explore the design space of health- related social media to facilitate patient expertise locating Goal

User-centered approach I. Initial design II. Focus group #1 III. Re- design IV. Focus group #2 Field study

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 artifacts 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  Detailed profiles

Use case Should I work through treatment or go on disability?  Side effects?  Income?  Insurance? Lily

 Online cancer community  Question & Answer forum  Detailed profiles  Patient expertise locator

Identification strategies: Who knows what? 1. Personal networks 2. Gate keeping 3. Grouping 4. Artifacts 5. Unsolicited advice

Selection criteria Who do I approach? 1. Source knowledge 2. Transparency 3. Connection to cancer 4. Availability 5. Strength of social tie 6. Lifestyle & interests

Selection criteria Who do I approach? 1. Source knowledge 2. Transparency 3. Connection to cancer 4. Availability 5. Strength of social tie 6. Lifestyle & interests

Selection criteria Who do I approach? 1. Source knowledge 2. Transparency 3. Connection to cancer 4. Availability 5. Strength of social tie 6. Lifestyle & interests

Selection criteria Who do I approach? 1. Source knowledge 2. Transparency 3. Connection to cancer 4. Availability 5. Strength of social tie 6. Lifestyle & interests

Selection criteria Who do I approach? 1. Source knowledge 2. Transparency 3. Connection to cancer 4. Availability 5. Strength of social tie 6. Lifestyle & interests

Selection criteria Who do I approach? 1. Source knowledge 2. Transparency 3. Connection to cancer 4. Availability 5. Strength of social tie 6. Lifestyle & interests

Selection criteria Who do I approach? 1. Source knowledge 2. Transparency 3. Connection to cancer 4. Availability 5. Strength of social tie 6. Lifestyle & interests

Selection criteria Who 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  L inking 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 Acknowledgements Our participants iMed research group NLM #R01LM Citation Hartzler 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 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,

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 forumPatient Expertise Locator General 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.”