Shared portal access may be particularly relevant in dementia care due to the long disease course of illness, high rates of co-occurring medical conditions, and the progressive and profoundly disabling morbidity that necessitates heavy reliance on assistance from others. Evidence-based models of support for care partners of persons living with dementia have typically been developed outside real-world care settings; few explicitly engage family at the point of care or are poised for widespread diffusion. Little is now known about electronic information sharing preferences and practices of persons with dementia and their care partners, or the feasibility of deploying novel interventions through consumer health information technologies to better support ADRD care and management.

A new five-year, National Institute on Aging-funded Leadership Award to Jennifer Wolff is convening an interdisciplinary group of talented social scientists and clinician-scientists from Johns Hopkins and external institutions to better understand and address the needs of care partners of persons living with dementia. Two programmatic activities are being pursued:

  • The first activity will produce new knowledge of individual, contextual, and organizational factors that affect patient portal use and contribute evidence regarding the effects of access and use of such technologies on ADRD care quality and outcomes.
  • The second activity will apply design thinking to understand how persons with dementia and their care partners, clinicians, and other relevant stakeholders perceive and use consumer health information technology, and identify and test novel technology-supported scalable innovations, such as person-family agenda-setting and OurNotes.

Read more about the project >

For more information about how to get involved, contact Danielle Peereboom at [email protected].

Project Team

Center for Home Care Policy & Research
Julia Burgdorf, PhD

Johns Hopkins University
Halima Amjad, MD, MPH
Chanee Fabius, PhD, MA
Ariel Green, MD, PhD, MPH
Kelly Gleason, PhD, RN
Stephanie Nothelle, MD
Danielle Peereboom, MPH
Danielle Powell, AuD, PhD
Aleksandra Wec, BA
Jennifer Wolff, PhD
Talan Zhang, MPH, MS

OpenNotes at Beth Israel Deaconess Medical Center
Cait DesRoches, DrPH

University of Colorado
CT Lin, MD
Hillary Lum, MD, PhD

Weill Cornell Medical Center
Catherine Riffin, PhD