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

Abstract

To 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.

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

“… 48 . Additionally, ACP is one of the quality measures included in the Dementia Management Quality Measurement set 50 and has been included in many value‐based payment schemes; thus healthcare systems are incentivized to invest in informatics support to measure the occurrence of ACP and to reward higher‐performing providers 51 . Furthermore, healthcare systems along with EHR vendors need to invest and support in embedding PCROs into EHRs and clinical workflows 30 .…”

“…The use of proxies to help measure patient‐reported outcome measures also may hold some promise for PLWD if viewed as complementary rather than substitutive 66,67 . Emerging data capture methods such as natural language processing (NLP) to measure ACP documentation, patient portals to measure electronic PCROs along with wearable devices, smartphones, and artificial intelligence to help measure prognosis and patient‐related parameters may also yield future highly pragmatic outcome measures 51,68–72 . In ADRD pragmatic trials conducted in the home or community setting, a multi‐level approach will likely need to be considered for the collection of PCROs in the absence of healthcare records or administrative data collection methods 73 …”

“…48 Additionally, ACP is one of the quality measures included in the Dementia Management Quality Measurement set 50 and has been included in many value-based payment schemes; thus healthcare systems are incentivized to invest in informatics support to measure the occurrence of ACP and to reward higher-performing providers. 51 Furthermore, healthcare systems along with EHR vendors need to invest and support in embedding PCROs into EHRs and clinical workflows. 30 An example of this being done successfully is the integration of several short PROMIS ® measures including computer adaptive tests (CATS) and Item response theory (IRT) approaches into EHR Vendors like Cerner and EPIC.…”

Use of the patient portal among older adults with diagnosed dementia and their care partners

“…5,31,32 For example, care partner identification and support are components of Dementia Care Planning that could be facilitated through portal-mediated questionnaires that proactively identify care partners as well as their dementia knowledge and support needs. 20 Our study advances the development of a Portal Activity Metric to standardize analyses of patient engagement in portal-based interactions by reporting activity relative to the intensity of encounters within a given health system. One systematic review found that few analyses of patient portal use have captured whether or to what degree patients have been under active clinical care, 33 which is an important factor in contextualizing portal use as well as staff and clinician time.…”

Patient Portal Use Among Older Adults With Dementia Diagnosis

“…1 The estimated $461 spending for those with group private insurance in 2019 was in between the estimated amounts for a commercially insured sample using narrow ($291) and broad ($538) definitions of primary care. 2 The study is limited by MEPS being subject to underreporting of medical visits, although MEPS produces nationally representative estimates of primary care spending for all insurance sources. The degree of underreporting varies little by population characteristics: age, sex, race and ethnicity, and insurance source, 4 and MEPS data are used to derive official estimates of national health care spending.…”