• whitepaper (long) - http://www.hl7.org/documentcenter/public/ballots/2022SEP/downloads/HL7_PCD_R1_I1_2022SEP.pdf
  • wiki (long) - https://confluence.hl7.org/display/PE/Patient+Contributed+Data+Whitepaper

Patients, and their caregivers, are the closest observers of their own health, and often have information related to their health status that should be available to treating clinicians, health records, and health information exchanges.

The data represented by this information includes but is not limited to the following: personal observations and assessments of their own health & mental status; responses to health/clinical surveys; patient-recorded vital signs; patient goals, preferences, and priorities for medical treatment (goals of care); patient health readings from devices/wearables/sensors; and their own medication history (both prescription as well as non-prescription) including supplements, vitamins, OTC medications, to include such important information as noted side effects and actual patterns of medication ingestion.

The presence of patient contributed data can be critical to care teams as part of understanding the patient’s health condition between visits and during episodes of care, as it illuminates potentially unappreciated patterns and correlations in important information about the patient.

Patient Request for Corrections

here’s the related (but different) Patient Request for Corrections spec - https://build.fhir.org/ig/HL7/fhir-patient-correction/

“So you get a copy of your medical records & dive in, reading line by line, trying to make sense of your new lung cancer diagnosis.

‘Wait a second, this doesn’t sound right. This is a mistake. I don’t have a history of a heart condition & I don’t smoke cigarettes,’ you mutter to yourself.

You call your oncologist’s office to report the mistake you found & ask to have it updated. You’re told to write down the correction & fax it to the office. You do exactly as you are told.

A month later at your next follow up appointment, you ask your doctor if your record was updated & the correction was made. He looks up at you with a deer-in-headlights-look that clearly signifies a NO.

On your way out, you stop at the front desk, write the correction down again, & the staff assures you they’ll take care of it.

Lather, rinse, repeat. Months later, it’s still not corrected. You also find out your cancer is progressing. The nurse asks if you are still smoking cigarettes. Your treatment options are discussed but there are concerns of trying new medications because of your heart condition. Cardiotoxicity is a common side effect of many cancer treatments. It may exclude you from a clinical trial.

There are endless stories of errors & omissions that patients have found upon reviewing their medical records.”