1. What is the decision or change (e.g. clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?
Potential benefits to treatment-seeking if patients were given control over what is or isn't recorded in their medical records? If patients were given a way to access completely anonymous, completely unrecorded healthcare, what benefits would there be in terms of patients accessing treatment who otherwise weren't? Especially relevant for more embarrassing ailments such as those related to bladder, bowel, reproductive organs etc. Would there be benefits in terms of lower mortality of bladder and bowel cancers if record-keeping were more respectful of patient wishes?
2. Why are you struggling with this issue?
It's clear to me as a patient that medical records are a significant barrier to patients sharing information with their doctors, especially now they're shared around so freely. I feel like I'm pointing out that the emperor has no clothes in saying that more people would seek treatment if it weren't for those blackmail dossiers.
3. What do you want to see changed? How will you know that your issue is improving or has been addressed?
I would love to see patients given control over their medical records, and I would love to see the health benefits that would flow from that. Empowering patients to take control of their healthcare has known benefits to health outcomes, and the one area where patients are completely disempowered is over our medical records.
4. When do you need the evidence report?
5. What will you do with the evidence report?
Optional Information About You
What is your role or perspective? Patient
May we contact you if we have questions about your nomination? No