Monday, October 19, 2020

Patient Access to Notes is Coming! Is Palliative Care Ready?

by Christian Sinclair (@ctsinclair)

Patients and families across the US are about to get a close look under the hood of electronic health records in just a few weeks. Starting in November, the 21st Century CURES Act is putting in place the rules for patient access to their health records including the clinical notes of the clinicians. Your organization is possibly planning for this new access to be flicked on like a light switch in the inky dark of night. Some of you may be shocked and seeing this for the first time, some of you have seen glimmers, some of you are well prepared, and some have had your eyes long adjusted and are probably thinking, “What’s the big deal with patient access?”

Patient access to notes feels like it should be in our wheelhouse. It is about communication, patient-centeredness, and talking openly about hard truths. But understandably without much preparation, many palliative care and hospice clinicians are going to feel underprepared, which may cause a lot of anxiety. But there is hope! And time! Well, a little bit of time, but still time!*

If all of this is news to you, I would encourage you to first spend some time on the OpenNotes website - www.opennotes.org. The group started over a decade ago to help clinicians and patients navigate this potentially tricky territory so that both can benefit. It is not directly related to the CURES act nor responsible for the implementation. The OpenNotes site has great resources, tips, videos and links to research of what other specialties have been exploring like adolescent patients and confidentiality, mental health, and caregivers.

Second, if you are on Twitter, definitely follow friend of the blog, Liz Salmi (@TheLizArmy), and OpenNotes on your preferred social media platform (Twitter, Facebook, LinkedIn, YouTube)

Third, newly armed with some information, go talk with your colleagues at your organization and your leadership about what local resources and info you need to know. Do your note templates need to change? What will you be telling your patients and families to expect? How will your group handle sensitive information that you would not feel comfortable immediately sharing with patients and families? How will this impact your collaboration with other teams when you have conversations via your notes?

Fourth, now that you have thought about it and notified the people you work with, make time to attend some online Q and A sessions organized by the OpenNotes team. This Wednesday, October 21th from 5-8pm ET, there will be a live AMA (Ask Me Anything) on Reddit (r/medicine) with myself and a number of other colleagues who will be taking questions on the ins and outs of OpenNotes. Next week on October 29th 11a-Noon ET, I will be giving a Grand Rounds Webinar with the group at OpenNotes. It is free to register, and I hope someone from your group will take time to attend.

Lastly, If you have any tips, tricks, questions, please add them in the comments below. I will work hard over the next few weeks to stay on top and get them answered!

Now, let’s review your plan:
1 - Read the OpenNotes website for practical information and research.
2 - Go follow key people on Twitter who talk about patient access to notes.
3 - Talk to your colleagues at work and your leadership to prepare for patient access to notes.
4 - Register for the webinar and check in on the Reddit AMA.
5 - Leave tips, tricks and questions in the comments below.

Christian Sinclair, MD, FAAHPM, is a palliative care physician at the Univeristy of Kansas Health System working in outpatient palliative care and leading the research group there. When he is not fixing the order of the 'i' and the 'a' in the word pallaitive, he can be found coming up with unneccessary acronyms.

*And speaking of time, I do want to apologize for not banging the drum on this earlier and louder. I have been a fan of the work OpenNotes has done for a long time, and sharing my notes for the past few years. The CURES act was passed into law in late 2016. The final rule and timelines were finalized in Spring of 2020. I should have been much louder about this, but with COVID, it did not seem as critical until it got much closer, and now it is nearly here. So I am working to make amends!

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