Catalyzing dementia care through the learning health system and consumer health information technology

Author:

Wolff Jennifer L.1ORCID,DesRoches Catherine M.2,Amjad Halima3,Burgdorf Julia G.4,Caffrey Melanie5,Fabius Chanee D.1,Gleason Kelly T.6,Green Ariel R.3,Lin Chen‐Tan7ORCID,Nothelle Stephanie K.3,Peereboom Danielle1,Powell Danielle S.1,Riffin Catherine A.8,Lum Hillary D.9

Affiliation:

1. Department of Health Policy and Management Johns Hopkins Bloomberg School of Public Health Baltimore Maryland USA

2. OpenNotes/Beth Israel Deaconess Medical Center Department of Medicine Harvard Medical School Boston Massachusetts USA

3. Division of Geriatric Medicine and Gerontology Johns Hopkins University School of Medicine Baltimore Maryland USA

4. Center for Home Care Policy & Research Visiting Nurse Service of New York New York New York USA

5. Springer Science+Business Media LLC Oracle Magazine Computer Technology and Applications Program, Columbia University New York New York USA

6. Johns Hopkins University School of Nursing Baltimore Maryland USA

7. University of Colorado Aurora Colorado USA

8. Division of Geriatrics and Palliative Medicine Weill Cornell Medical Center New York New York USA

9. Division of Geriatric Medicine University of Colorado School of Medicine Aurora Colorado USA

Abstract

AbstractTo advance care for persons with Alzheimer's disease and related dementias (ADRD), real‐world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long—an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We discuss how stakeholder engagement in an ADRD LHS when embedding, adapting, and refining prototypes can ensure that products are viable when implemented. Finally, we highlight the promise of consumer‐oriented health information technologies in supporting persons living with ADRD and their care partners and delivering embedded ADRD interventions at scale. We aim to stimulate progress toward sustainable infrastructure paired with person‐ and family‐facing innovations that catalyze broader transformation of ADRD care.

Funder

National Institute on Aging

Publisher

Wiley

Subject

Psychiatry and Mental health,Cellular and Molecular Neuroscience,Geriatrics and Gerontology,Neurology (clinical),Developmental Neuroscience,Health Policy,Epidemiology

Reference63 articles.

1. Association As.2022 Alzheimer's disease facts and figures. Alzheimer's & dementia : the journal of the Alzheimer's Association.2022. Accessed September 01 2022. doi:10.1002/alz.12638.

2. NASEM.Meeting the challenge of caring for persons living with dementia and their care partners and caregivers: a way forward.National Academies Press;2021. Accessed 5/1/2021.https://www.nap.edu/catalog/26026/meeting‐the‐challenge‐of‐caring‐for‐persons‐living‐with‐dementia‐and‐their‐care‐partners‐and‐caregivers

3. Potentially Unsafe Activities and Living Conditions of Older Adults with Dementia

4. The Disproportionate Impact Of Dementia On Family And Unpaid Caregiving To Older Adults

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