Electronic Health Records for Dementia Care Research in 2026: Questions People With Mild Cognitive Impairment Can Ask About the Research

EHRs for dementia care research are routine clinic, hospital and billing records reused for dementia studies. If you have mild cognitive impairment, early memory or thinking changes, focused questions about purpose, risks and data use help you decide.

EHRs include visit notes, diagnoses, medicines, labs and claims. Researchers use them to spot undiagnosed dementia and study care. People with mild cognitive impairment can ask what a study will do, what it needs from them, and how their information will be handled.

Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.

How do researchers use routine records?
What should you ask before joining a study?
How will my information be used and shared?
What can I check in my own record?

How do researchers use routine records?

Researchers developed eRADAR, a 31-predictor tool that flags unrecognized dementia from routine records. The team tested it in 16,665 visits among 4,330 Adult Changes in Thought participants at Kaiser Permanente Washington, according to the Journal of the American Geriatrics Society study described in the validated 31-predictor study. Clinics are also adding AI and digital markers to primary care. Embedding those tools increased new dementia diagnoses by 31% versus usual care, according to the Digital Watch Observatory report on early detection in primary care.

The same report found 41% more follow-up cognitive tests and brain scans for at-risk older adults. These tools do not diagnose by themselves. They sort records to find who may need a closer check. A flag in your chart can lead to a visit, a memory test, or a referral.

What should you ask before joining a study?

The National Institute on Aging advises people considering Alzheimer's and related dementias research to take time with family and learn the options. Its guidance on participating in Alzheimer's research says to ask the research team about purpose, procedures, risks, benefits, duration and alternatives before deciding.

Use those topics as a short checklist at the first contact: Write down the answers in plain words. Ask who to call with side effects, memory worries or schedule conflicts. Bring a family member or friend to hear the details with you.

What is the purpose, and why am I a possible match?
What visits, tests, medicines or devices are involved?
What are the risks, burdens and possible benefits?
How long does it last, and what are the alternatives?
Who sees my records, and can I leave the study later?

How will my information be used and shared?

Ask whether the study reads your EHR, claims or pharmacy data. Ask which years it covers, whether it pulls notes or only coded diagnoses, and whether wearables, surveys or genetic data are added. Ask how long data are kept and whether outside researchers can use them. Ask about consent in clear terms.

Find out what you sign at enrollment, what is optional, and what happens if you say no to part of it. Ask whether you can pause sharing, correct an error, or withdraw without losing your usual care. Records can be incomplete, miscoded or split across clinics. A missing test or an old diagnosis code can change how a tool scores risk. Ask how the team checks record quality before acting on it.

What can I check in my own record?

You have a broad right to see and get copies of your health information. HHS explains that the HIPAA right covers all designated record sets, including medical, billing, claims and case-management records, in its guidance on patient access rights. You can also ask for corrections where the record is wrong. Review diagnoses, medicines, allergies, visit summaries and test results.

Look for outdated memory diagnoses, duplicated medicines, or visits that belong to another person. Small errors matter because research tools read the same entries. Ask your clinic how to request copies, how long a fix takes, and how to add a short note when you disagree. Bring a list of current medicines and recent memory concerns to that records review.