Free in the US? Let's hope that it is not fake news for patients ...
On the 5th of April US law is changing - and no: it is neither a law by Trump nor Biden. And the consequences for patients are significant. The '21st Century Cures Act' was signed into law on December the 13th 2016 by Barak Obama and will allow patients to request full access to test results, medication lists, referral information and clinical notes in electronic format and free of charge.
For many patients this has been in the making for some time: Through platforms like OpenNotes many US patients have had the opportunity to access clinical notes and communicate with their clinician.
A new and more interesting challenge will be the access of patients to hospital's inpatient notes: In the United Kingdom these are peppered with jargon and has not changed much despite appeals by professional organisations to limit the amount of 'insider' language used. Clinicians are using an amazing range abbreviations which make them incomprehensible even for medically trained specialists from other countries, so much so that the National Health Ser
vice has published a whole webpage with a dictionary of them. In order to make the access for patients meaningful clinicians will need to declutter their language.
The change in US law will be carefully watched by many in the UK. This could be a new dawn for patient empowerment or yet another false start where small print allows providers to re-interpret the rules or clinicians coding the information into terms that are meaningless to lay people.
For those who would like to learn more and discuss the likely impact on the US (and by proxy) the global h
ealth economy Catherine DesRoches, executive director of OpenNotes will join us six weeks after the law has come into action on the 21st of May at 'Patient Powered Safety'. You might have read her editorial in the BMJ. I can't wait to hear what her first experiences will be!
Catherine will be joined by Maria Hägglund who has previously been a researcher for OpenNotes prior to returning to her native Sweden. Maria's research interest is the impact of user-centred systems on patient empowerment.
If you are interested in this topic: Why don't you e-mail us questions for Catherine and Maria?