During a zoom call, Sat told Brian that he and I are “so American.” She described her perception that Americans are much more concerned with their rights than Australians are. Although the lack of concern for others under the guise of freedom during COVID-19 is not a good example of standing up for individual rights, a major theme of the AMIA Clinical Informatics Conference I attended in Houston last week was patient’s rights to the data generated by the healthcare system and to be true partners in all aspects of the learning health system.
I liked two major points made during a panel on Placing the Patient-Caregiver-Clinician Triad First in Partnering and Co-designing Clinical Decision Support:
We need to bake in patient partnering in all of the stages of the LHS.
Patients should be actively involved in creating a care plan with their caregiver, and the care plan should include 4 cornerstones: the patient’s health concern, the patient’s goals, the activity/intervention, and measurement of the outcome that matters to the patient.
Patient portals provide access to lab values, medications, and increasingly frequently, outpatient notes. A panel on Sharing Hospital Progress Notes with Patients and Caregivers: Too Early or Long Overdue looked at evidence about how and when notes written during hospitalization should be made available, including in children’s hospitals. The resounding conclusion as I heard it was:
1) Physicians have more concerns than patients and families, but negative impact was minimal, even in a children’s hospital
2) Most parents and patients felt much more engaged and part of the care team, whereas for a minority it caused worrying. In spite of some negative effects for parents, all of them wanted access to notes in future hospitalizations.
Efforts to support patients in using the notes include a preamble at the beginning of the note and a message in the portal, education of parents/patients, and tools.
Returning to Sat’s comment, the 21st Century Cures Act in the US states that “The health records belong to the patient.” Therefore, health systems must give patients and their proxies unrestricted, on-demand access to all specified electronic health information. When I asked for advice in working through this decision in Australia, the first case they suggested I make is “this information is the patient’s, so there is no ethical reason not to share it with them. The question is how to do it in the best way.” Will that fly here? Brian Chapman and Megan Prictor are working with two medical students to explore the legal and legislative rights of patients in Australia when it comes to electronic health information, and I look forward to their findings and suggestions for the future!
Regional Linguistic Quirks (RLQ): Another new term for me since moving to Australia is “chockablock.” According to Merriam-Webster, a block is a case with pulleys inside from a “block and tackle” on bots to hoist sails. When a rope is pulled as far as it will go, the blocks are tight together and labeled chockablock. I have heard “chock full”, which comes from the Middle English “chokkefull” or full to the limit. The association with this “chock” gave chockablock the additional meaning of filled up.
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