The SOARING study and its resulting guide provide a deeper understanding of older adults’ personal health information management (PHIM) needs and practices.
This information is vital to designing and creating effective PHIM systems that best support the health and independence of older adults, who are the largest consumers of health care.
With the Guide to Older Adult-Centered Design, health organizations can take a holistic approach to supporting older adults, as well as their family members, friends, and providers. The guide specifically assists designers and developers in creating health information technology systems that better meet the needs of older adults and their caregivers.
Managing health information can be particularly difficult for older adults and people with multiple health conditions who often have visits with numerous providers, different treatment plans, and a variety of medications. Consequently, the burden of health information management disproportionately affects older adults. As the largest consumers of health care, older adults’ use (or the lack thereof) of the PHIM tools has profound consequences for the nation’s health care delivery as a whole.
Building a PHIM system that is holistic and inclusive of older adults improves the health care system for everyone.
Backed by Research
Study Dates: September 2013 – August 2019
Through qualitative fieldwork, we gained insights to inform the design of the guide, a supportive tool that can help meet the information management needs of older adults and their caregivers.
The five-year project was funded by the Agency for Healthcare Research and Quality.
Our Research Goals
- A rich description of the PHIM needs and practices of older adults from diverse socioeconomic groups and in a variety of residential settings
- Examine the roles key friends family and providers play in PHIM for older adults
- Develop a holistic model the personal health information needs and practices of older adults
- Develop a set of design guidelines to assist health information technology developers to create systems that meet the needs of older adults and their caregivers
AIM 1: Understand older adults’ personal health information management needs and practices, as well as how they managed their personal health information over time
We conducted a series of focus groups to explore how older adults conceived of and used personal health information in their day-to-day lives. Then, we conducted one-on-one interviews with older adults in their homes, to characterize their personal health information management needs. By visiting their homes, we examined how older adults do things naturally.
We also followed a select group of older adults over several months. We aimed to better understand their daily needs, challenges, and information management strategies through home visits and phone interviews. In doing so, we gained an understanding of how changes in health and other life issues impact information management practices.
AIM 2: Understand the role of key stakeholders in supporting older adults’ personal health information management
We interviewed stakeholders (e.g., family, friends, and providers) who help older adults manage personal health information to understand their role, including what helps them and barriers they face.
AIM 3: Create a model of the health information management needs and practices of older adults and key stakeholders
Based on what we learned, we developed a model of older adult personal health information management. The model takes into consideration information needs, social networks, and environmental context.
AIM 4: Develop design recommendations to meet the personal health information management needs of older adults.
We created personas and scenarios to represent the people we interviewed, including older adults and other stakeholders, as the basis for design concepts. We collaborated with older adults and stakeholders to ensure we were on the right track.
Ultimately, we iteratively refined these concepts into design recommendations for broad dissemination.
Publications
Sakaguchi-Tang D, Turner AM, Taylor JO, Kientz J. Connected Personas: Translating the Complexity of Older Adult Personal Health Information Management for Designers of Health Information Technologies. AMIA Annu Symp Proc. 2019. (in press)
Demiris G, Lin S, Turner AM. The role of personal health information management in promoting patient safety in the home: A Qualitative Analysis. MEDINFO. 2019.
Kang Y, Taylor JO, Osterhage K, Turner AM. Home Care Nurses' Perspectives Regarding Health Information Management Among Older Adults. Home Healthcare Now. 2019; Nov/Dec.
Taylor JO, Hartzler AL, Osterhage KP, Demiris G, Turner AM. Monitoring for change: the role of family and friends in helping older adults manage personal health information. JAMIA. 2018.
Turner AM, Osterhage KP, Taylor JO, Hartzler AL, Demiris G. A closer look at health information seeking by older adults and involved family and friends: design considerations for health information technologies. AMIA Annu Symp Proc. 2018; 2018:1036-1045.
Hartzler AL, Osterhage K, Demiris G, Phelan EA, Thielke SM, Turner AM. Understanding views on everyday use of personal health information: Insights from community dwelling older adults. Informatics for Health and Social Care. 2017.
Sakaguchi-Tang D, Bosold A, Choi Y, Turner AM. Patient Portal Use and Experience Among Older Adults: Systematic Review. JMIR Medical Informatics. 2017; 5(4):38.
Turner AM, Osterhage K, Loughran J, Painter I, Demiris G, Hartzler AL, Phelan EA. Emergency information management needs and practices of older adults: A descriptive study. International Journal of Medical Informatics. 2017.
Turner AM, Osterhage K, Hartzler A, Joe J, Lin L, Kanagat N, Demiris G. Use of Patient Portals for Personal Health Information Management: the Older Adult Perspective. American Medical Informatics Association Annual Symposium Proceedings. 2015.
The Team
- Anne M. Turner, MD, MLIS, MPH, FACMI, Principal Investigator
- Alyssa Bosold, MPH student
- Yong Choi, PhD student
- George Demiris, PhD, MSc, FACMI
- Andrea Civan Hartzler, PhD
- Jonathan Joe, PhD student
- Julie Kientz, PhD
- Katie Osterhage, MS
- Ian Painter, PhD, MSc
- Miruna G. Petrescu-Prahova, PhD, MA
- Elizabeth Phelan, MD, MS
- Dawn Sakaguchi-Tang, MS, PhD student
- Jean O Taylor, PhD
- Stephen Thielke, MD, MA, MSPH
- Selena Xu, BS student
Community Partners
- Era Living
- Full Life Care
- The Hearthstone
- Horizon House
- Northhaven Senior Housing
- Providence Vincent House
- Seattle Housing Authority
- Senior Housing Assistance Group
