"Inviting patients to read and review their health information, especially the notes written after a medical visit, is an important way to improve communication between patients and health professionals ..."
I’ve been thinking about information. How much information about their cancer should a patient receive and how should it be delivered? I’ve read the Open Notes website! (https://www.opennotes.org/) This covers a movement in medicine where clinicians share their notes with the patients while they are writing them or shortly thereafter.
But there are other areas where information is needed too. How about educating patients about the nature of their cancer? Ignorance isn’t bliss; denial doesn’t work for long. I’ve learnt this from experience when my fertile imagination has filled in gaps in knowledge. Without knowledge, we are not going to take such good care of ourselves. Is keeping information from us acceptable in the 21st Century? We've come a long way in the last century but we still have a way to travel down the transparency and patient education highway.
What is Open Notes?
What follows is a series of quotations from their website.
OpenNotes is the international movement that’s making health care more transparent. It urges doctors, nurses, therapists, and others to invite patients to read the notes they write to describe a visit. We call these open notes ...
Designed for health professionals learning about open notes, the Implementation Toolkit provides materials to help you gain support in your health system, think through policy decisions and communication materials to prepare for launch, and get the most out of note sharing once you’re up and running ...es materials to help you gain support in your health system, think through policy decisions and c
Making the Case for Open Notes
Inviting patients to read and review their health information, especially the notes written after a medical visit, is an important way to improve communication between patients and health professionals, to enhance engagement, and to help patients become more active in their own care. Moreover, research continues to show that engaged patients have better health outcomes ...
Patients Want Open Notes and Report Benefits from Reading Their Notes
The original OpenNotes study involving patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Harborview Medical Center in Seattle found that 80% of patients offered open notes read at least one note over the year-long study period, and 99% wanted the practice to continue, whether or not they chose to read their notes. Subsequent survey data from Kaiser Permanente (NW) and the Department of Veteran’s Affairs (VA), the first system to adopt open notes across all disciplines, have shown similar results ...
77-87% of patients said open notes helped them feel more in control of their care.
60-78% of those taking medications reported better adherence.
85% of patients said they would choose a health professional based on the availability of open notes.
Your notes are about you. Being able to read them is not a privilege. It’s a federally protected right. (I think this applies in NZ too.) Today, more than 21 million people can read their notes when and where they want. We’re working hard for the day when all patients can do the same ...
Here is a great video from the website.
Quotes from the video:
"It didn't turn out to be the time suck people thought it would be." (GP)
"He accepts me as owner and prime driver of this little collection of cells." (Patient)
What about educating patients so that they understand their disease and can cope with it better? At present, patients might be given a book about Head and Neck Cancer from the Australian Cancer Society. They might get a booklet about the multidisciplinary meeting and a sheet about a procedure they will undergo, as in my case, a marginal mandibulectomy. These days they might be referred to this website and Beyond Five’s excellent 3D animations.
All the above is good but we can do better to encourage people to take more interest in the technicalities of their cancer. I wonder if a double sided sheet with internet links might be helpful for patients and carers with a thirst for knowledge and education. Imagine if we put our own local information in a document like this that treats the patient or carer like an intelligent person.
No handout is going to work properly unless someone, maybe a nurse, could sit with the patient for ten minutes, go through the material and point out how it might be useful.
Finally, when i was researching this story, I found the article below which is about patient/clinician communication and information during ward rounds. Well worth a read.