As regular readers know, our Society for Participatory Medicine has always been a strong advocate for the OpenNotes movement as a key enabler of patient power.  As co-founder Dr. Danny Sands often says in his speeches, “How can patients participate if they can’t see what I see?” Not surprisingly, this site has often blogged about OpenNotes, starting with the initial research study from 2010-2012 that proved the world doesn’t end when patients see their notes. To the contrary, good things happen: OpenNotes: The results are in. GREAT news for patient engagement.

A lot more research has been piling up since that first paper ten years ago, broadening the academic knowledge base, further establishing what OpenNotes co-founder Tom Delbanco refers to as “a new medicine: it has benefits, side effects, indications and contraindications.”

Last week OpenNotes launched a valuable new tool on their website: a way to search and sort nearly 10 years of research on open visit notes. Checkboxes make it possible to filter results by subject, type of publication, and author last name. Search results appear as an annotated bibliography:

Montage of search results for category “patient experience” (click the image to see this search live)

More submissions are invited: “We’re excited about the search tool and want to be as inclusive as possible by adding more papers,” said Liz Salmi, the Senior Strategist of Research Dissemination for OpenNotes (@TheLizArmy). “The search tool may always be a work in progress because we manually add each publication—we read every paper before including it, to ensure its scientific validity, its relevance, and proper tagging. We encourage anyone publishing the topic of open visit notes to send us a link or PDF of their paper so we can consider it for inclusion.”

Salmi said the group has plans to expand on the research tool by including publications not authored by individuals associated with OpenNotes, and adding more search filters to select publications that are open access or no longer behind a paywall. 

Below are some additional thoughts. Play with the OpenNotes Research tool here: https://www.opennotes.org/research/

Events and more

A key part of changing any field is not just doing the research but disseminating it – spreading the word. OpenNotes takes this seriously – in addition to the literature search, they offer events aimed for different topics and audiences. Current samples:

• 12/14/20: Open Notes 101 Webinar and Office Hours with Sara Jackson, MD, MPH, and Cait DesRoches, DrPH
• 10/30/20: How to write an open note for patients: 2020 edition with U of Colorado’s legendary primary care physician CT Lin.
• 10/29/20: OpenNotes Grand Rounds Webinar: Sharing Palliative Care Notes
• 10/21/20: Reddit: “Ask Us Anything” about open notes  
• 9/29/20: Grand Rounds Webinar: OpenNotes Lessons from Canada and Sweden

There are also sub-sites with information designed for both sides of the participatory relationship:

My wishlist for the search feature

As Liz said, this is just a start. My suggestions for enhancements:

• I’d love to see it link to the article’s page on PubMed or Google Scholar so I can see what other papers have cited it.
• The search results page displays the articles, but I’d love to have it also display a count (“3 articles found”)
• I’d love it if the search box also searched the metadata, not just the article text.  (I searched for Salmi’s name and got no hits; I had to select her in the author list.)

Have more ideas? Add them in a comment.