Transcript Exploring Personal Health Records for Older Adults and Their

Exploring Personal Health
Records for Older Adults
and Their Caregivers
Laura Kneale, MS
PhD Candidate
University of Washington Biomedical and Health Informatics
University of Chicago Medicine
University of Washington
Outline
> Older adults, personal health records, and patient
portals
> Considerations when designing and implementing PHRs
for older adults and caregivers
PHR Research Studies
1. Analysis of the functionality of publically available
personal health records
2. Scan of personal health record market
3. Usability evaluation of 3 personal health records
4. Defining the value of personal health records:
perspectives from older adults and their care team
5. Preliminary effectiveness of PHRs in the homebound
older adult population
Number of Persons 65+ (in millions) in the US
120
100
80
60
40
20
0
1900
1920
1940
1960
1980
2000
2013
A Profile of Older Americans. Washington: Administration on Aging, Administration for
Community Living, U.S. Department of Health and Human Services, 2014.
2020
2040
2060
Living Arrangements
Men 75+
Men 65-74
8%
6%
22%
17%
70%
77%
Purple: Living with Spouse/Partner
Yellow: Living Alone
Vespa J, Lewis JM, Kreider RM. America’s Families and Living Arrangements: 2012. U.S. Census
Bureau. Washington, DC: Aug. 2013.
White: Other
Living Arrangements
Women 75+
Women 65-74
21%
15%
33%
27%
57%
Purple: Living with Spouse/Partner
46%
Yellow: Living Alone
Vespa J, Lewis JM, Kreider RM. America’s Families and Living Arrangements: 2012. U.S. Census
Bureau. Washington, DC: Aug. 2013.
White: Other
U.S. Health and Health Care Use Among 65+
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
87%
68%
53%
29%
At Least 1
Chronic
Condition
2+ Chronic
Conditions
25%
Hospitalized Saw 4+ MDs in Takes 4+
Overnight in
Past Year
Medications
Past 2 Years
Osborn R, Moulds D, Squires D, Doty MM, Anderson C. International survey of older adults finds
shortcomings in access, coordination, and patient-centered care. Health Aff (Millwood).
2014;33(12):2247-55.
Percentage of Persons 65+ with Activity
Limitations
40
35
30
25
20
15
10
5
0
36
23
15
15
9
9
A Profile of Older Americans. Washington: Administration on Aging, Administration for
Community Living, U.S. Department of Health and Human Services, 2014.
7
Self-Care Tools
Personal Health Records
Definitions:
Personal Health Record vs. Patient Portal
A PHR is “an electronic application through which
individuals can access, manage, and share their health
information … in a private, secure, and confidential
environment” - Markle Foundation
(Stated) Benefits of PHRs and Patient Portals
Improve/Increase:
> Patient satisfaction
> Patient activation and/or patient engagement
> Care coordination
> Medication adherence
> Clinical outcomes
> No-show rates
> Health literacy
Older Adult Populations with Highest Patient
Portal Users
>
>
>
>
Younger (65-69 years old)
Identify as non-Hispanic whites or Chinese
Female
Report higher levels of educational attainment (college
degree or higher)
> Score high on health literacy tests
1. Karter AJ, Liu JY, Adler NE, Nguyen R, Lopez A, Schillinger D. Social disparities in internet patient portal use in
diabetes: evidence that the digital divide extends beyond access. J Am Med Inform Assoc. 2011;18(3):318-21.
2. Goel MS, Brown TL, Williams A, Hasnain-Wynia R, Thompson JA, Baker DW. Disparities in enrollment and use
of an electronic patient portal. J Gen Intern Med. 2011;26(10):1112-6.
3. Gordon NP, Hornbrook MC. Differences in Access to and Preferences for Using Patient Portals and Other
eHealth Technologies Based on Race, Ethnicity, and Age: A Database and Survey Study of Seniors in a Large
Health Plan. J Med Internet Res. 2016;18(3):e50.
4. Smith SG, O'Conor R, Aitken W, Curtis LM, Wolf MS, Goel MS. Disparities in registration and use of an online
patient portal among older adults: findings from the LitCog cohort. J Am Med Inform Assoc. 2015;22(4):88895.
Potential Reasons for Disparities in Portal Use
>
>
>
>
>
Internet use and device availability
Health disparities
Health system bias
Differences in privacy and security preferences
PHRs aren’t designed for all older adults (Smith)
1. Karter AJ, Liu JY, Adler NE, Nguyen R, Lopez A, Schillinger D. Social disparities in internet patient portal use in
diabetes: evidence that the digital divide extends beyond access. J Am Med Inform Assoc. 2011;18(3):318-21.
2. Goel MS, Brown TL, Williams A, Hasnain-Wynia R, Thompson JA, Baker DW. Disparities in enrollment and use
of an electronic patient portal. J Gen Intern Med. 2011;26(10):1112-6.
3. Gordon NP, Hornbrook MC. Differences in Access to and Preferences for Using Patient Portals and Other
eHealth Technologies Based on Race, Ethnicity, and Age: A Database and Survey Study of Seniors in a Large
Health Plan. J Med Internet Res. 2016;18(3):e50.
4. Smith SG, O'Conor R, Aitken W, Curtis LM, Wolf MS, Goel MS. Disparities in registration and use of an online
patient portal among older adults: findings from the LitCog cohort. J Am Med Inform Assoc. 2015;22(4):88895.
Systematic Literature Review on Participants of
PHR Evaluations
Participants were:
> Aged 70 or below
> Attained high levels of education
> Reported low levels of medical complexity
> Reported intermediate or advanced computer literacy
> Did not include racial and/or ethnic information
> 20% included somewhat equal representation between
men and women participants (60% reported mostly male
participants)
Kneale L, Demiris G. Lack of Diversity in Personal Health Record Evaluations with Older Adult Participants: A
Systematic Review of Literature. Journal of Innovation in Health Informatics. Under Review.
Themes
> PHRs are not usable for older adults
> PHRs do not add value to older adult health information
management practices
Usability: Lack of Visual Accommodations
Usability: Challenging Navigation
> Back button doesn’t work (or logs you out)
> Headers mirror electronic medical record headers (e.g.
“Medication List” and “Medication Administration”)
> Lack of cross-links between often-used functionality
Opportunities for Increased Usability
> Evaluate your system for usability issues with different
patient populations
> Consider accessibility standards
> Don’t create functional siloes
Adding Value to Existing Health Information
Management Routines
Existing health information management artifacts:
> Paper-based:
–
–
–
–
Journals
Notebooks
File folders
Calendars
> Electronic:
– Medical devices
– Spreadsheets
– Word documents
> Pill-boxes
Miller S, Mutlu B, Lee J. Artifact Usage, Context, and Privacy Management in Logging and Tracking Personal Health
Information in Older Adults. Proceedings of the Human Factors and Ergonomics Society 57 th Annual Meeting. 2013
Adding Value to Existing Health Information
Management Routines (continued)
Conclusions
> We need to better understand the needs and desires
of different sub-populations of older adults
> Usability needs to be a primary concern of PHR
designers and implementers
– Visual accommodations are needed
– Clear navigation that highlights important functionality
> PHRs need to add value to existing health information
management processes
Thank you!
Laura Kneale, MS
[email protected]
Thank you to my UW colllaborators!
• Dr. George Demiris
• Dr. Hilaire Thompson
• Yong Choi
• Sean Mikles
• HEALTH-E team
www.health-e.info