Algorithmic identification of persons with dementia for research recruitment: ethical considerations

Underdiagnosis, misdiagnosis, and patterns of social inequality that translate into unequal access to health systems all pose barriers to identifying and recruiting diverse and representative populations into research on Alzheimer’s disease and Alzheimer’s disease related dementias. In response, some have turned to algorithms to identify patients living with dementia using information that is associated with this condition but that is not as specific as a diagnosis. This paper explains six ethical issues associated with the use of such algorithms including the generation of new, sensitive, identifiable medical information for research purposes without participant consent, issues of justice and equity, risk, and ethical communication. It concludes with a discussion of strategies for addressing these issues and prompting valuable research.</p

Validation of an Instrument to Measure Older Adults' Expectations Regarding Movement (ERM)

<div><h3>Background</h3><p>Many individuals with Parkinson's disease are not diagnosed and treated. Attitudes about aging and related help-seeking may affect the timely diagnosis of Parkinson's disease. Our objectives were to develop measures of older adults' expectations regarding movement with aging, specifically related to parkinsonism, and their beliefs about seeking healthcare for the diagnosis and treatment of parkinsonism.</p> <h3>Methods</h3><p>We established content and face validity from interviews with experts, review of the literature, and pre-testing with key informants. Two 9-item instruments resulted: Expectations Regarding Movement (ERM) and Healthcare Seeking Beliefs for parkinsonism (HSB). These instruments were administered to 210 older adults at senior centers to investigate internal consistency and construct validity.</p> <h3>Results</h3><p>192 (91%) of the older adults completed more than 90% of the survey. The mean age was 76; 17 (9%) reported parkinsonism. Both scales demonstrated good internal consistency (α = 0.90). Factor analysis supported construct validity of the ERM and HSB scores. Older age, lower education, worse self-reported health and African American race each were associated with lower ERM scores, but not HSB scores.</p> <h3>Conclusion</h3><p>The ERM, a brief measure of expectations regarding movement with aging, shows reliability and validity. This scale may be useful in identifying older adults at increased risk for under-identification of Parkinson's disease. Further work is needed to measure healthcare seeking for parkinsonism.</p> </div

Comparison of Expectations Regarding Movement (ERM) survey scores and Health Seeking Beliefs (HSB) for parkinsonism survey scores between groups.

<p>Comparison of Expectations Regarding Movement (ERM) survey scores and Health Seeking Beliefs (HSB) for parkinsonism survey scores between groups.</p

Descriptive statistics and reliability.

a<p>Scores were scaled from 0 to 100</p

Sample characteristics.

a<p>2 subjects with missing items</p>b<p>3 subjects with missing items</p

Additional file 1: of Willingness to participate in pragmatic dialysis trials: the importance of physician decisional autonomy and consent approach

Supplemental study results including patient and physician surveys (A); patient scores on the pre-test research knowledge questionnaire (B); physician characteristics (C); and associations with physicians’ willingness to participate (D). (DOCX 6242 kb