Over My Dead Body

If you died today, who would you want to have access, or not, to your medical records? The Health Insurance Portability and Accountability Act (HIPAA) ensures that personal health information (PHI) is not wrongfully used, improperly accessed, or shared. Did you know that HIPAA also protects an individual’s right to privacy for up to 50 years after their death?

Read on to learn about:
👉why your loved ones may need access to your medical records after your death. (**THIS IS A MUST READ LIFE-HACK**)
👉what guardrails are in place guiding access to a deceased individual's medical records.
👉challenges and information blocking routinely encountered by families.
👉how to prevent access being denied when it's needed the most.

https://www.unblock.health/blog/over-my-dead-body/

Like a Sitting Duck

A recent publication in JAMA, Optimizing the Trade-off Between Learning and Doing in a Pandemic left a great void from the patient and carepartner perspective.

I'm disappointed to see that, once again, patients & their carepartners are NOT included in the potential solutions to enrich BOTH learning & doing while in a pandemic.

This is one of the biggest failures of the clinical trial landscape, COVID-19 or not.

• What if we had a pandemic clinical trial consent process?

• What if people could be informed of trial options ahead of time and proactively provide consent to clinical trials in anticipation of being diagnosed with COVID19?

• Why can't I as a patient proactively consent to participate in a clinical trial for COVID19, as a just in case, especially while I'm literally sheltering at home in a COVID19 hotspot like a sitting duck?

We have advance directives for end-of-life care planning. Why not advance consent directives for potential clinical trial participation?

Just like the taboo about death and end-of-life care planning, talking about clinical trials is always too early, until it's too late.

Here's the article: https://ja.ma/3e72XJJ