Words. As we look ahead to an increasingly connected and interconnected world, how do we, as clinicians and patients, account for the words we use? How do we record the words we use to create a narrative and a context for ongoing treatment, as an archive of data that could help with research, with therapy development, and with better outcomes for patients?
Whose words do we record? If the data, and therefore the words, belong to the patient where is the balance between accurate recording and the possibility of doing harm or undermining therapy by noting everything? Where is the balance of disclosure and access if the words noted could be accessed by a patient with a history of mental health issues and which when read without support could set back or exacerbate an individual’s condition? Should I as a patient have the right to have full access to all notes, all results, all data held about me, if it might cause me harm? How does “do no harm” apply if I have the right to all of my data?
We don’t need to go down the well trodden path of use of language and stigma with the obligatory reference to Sontag’s “Illness as a Metaphor,” but, in this day and age of increasing use of technology, increasingly looking for ”activated patients” and with an increased onus on “the patient owns their data,” are we in danger of shooting ourselves in the foot?
What do we want, in terms of words and access to our records? As with all professional correspondence there is a need to communicate with respect, with dignity and with clarity. As patients what do we need? Do we need to access the granular detail that goes with a lab result? Perhaps. Do we need to read the notes from our last consultation, maybe. Is there scope for us to be co-authors of our own patient record? Are we a resource that can and perhaps should be much more invested in our own health, able to not only read the notes, but add to them with comments, observations, and feedback on the outcomes of our therapy as a dynamic process? Use apps and health diaries as a tool for tracking and managing—providing compliance and adherence data without the need for the words to be used? Is there a new lexicon of health needed, or about to emerge as access to our data accelerates and patients ask more questions, research online in more depth, and bring into our own lives a more pro-active attitude towards health?
Words. Not language, words. Where is the balance between your need to use an in-house technical language to best describe a condition or situation and our need to be able to follow and understand the narrative? If we are in this together, if you are my doctor and I am your patient, then can’t we do this together? Should I not be much more active in owning my own data, in ensuring I both understand and curate my own patient record?
My Doctor. My consultation. My therapy. My choice.
My responsibility?
Paul Buchanan is a patient with Type 1 diabetes. He runs Team Blood Glucose. He is part of The BMJ‘s patient panel.
Competing interests: None declared.
Related links:
http://www.kingsfund.org.uk/publications/supporting-people-manage-their-health
http://www.amjmed.com/article/S0002-9343(16)30548-4/pdf
https://www.england.nhs.uk/ourwork/patient-participation/self-care/patient-activation/pa-faqs/