Living your best life with arthritis.

It’s time to see your rheumatologist. Let’s record and take notes!

Picture of smartphone and journal with pen for taking notesIt’s time to see your rheumatologist and specialist. Please have your recorder, pens and paper ready.

A study published in Psychological Science provides two hypotheses as to why note-taking is beneficial in a classroom setting. The first hypothesis is called encoding hypothesis, which says that when a person is taking notes, “the processing that occurs” will improve “learning and retention.” The second hypothesis is called the external-storage hypothesis – you learn by being able to look back at your notes, or even the notes of other people.

The same concepts can be applied to your medical appointments and is currently practiced by Dr. James Ryan, a family physician in Ludington, Michigan. With his patients’ approval, Dr. Ryan records their appointments, then uploads the audio file to a secure web platform for his patients. The recordings are annotated so that patients can easily search for specific topics in the conversation. Patients will be empowered and engaged in their own healthcare because they will have a reference of what was discussed. They can give family members access to the recordings as well.

In an interview with the New York Times, Sheri Piper, a patient who is currently seeing Dr. Ryan about her gout, high blood pressure, hypothyroidism, anxiety and depression, said she relies on this system. “As aging continues, it’s harder to not be overwhelmed by what you hear in a doctor’s office.” For Piper, who has undergone numerous operations that affected her memory, she’d be told one thing but will forget all about it the next day.

Recording doctor appointments is a good idea, especially for older patients who have more than one health conditions, hearing loss or are struggling to recall the information provided to them during their doctors’ visit.

Dr. Elwyn, a researcher at the Dartmouth Institute for Health Policy and Clinical Practice and lead author of a recent JAMA editorial on patient recordings, added: “There’s more to remember and difficult words to decipher and interpret. When older patients want to tell a faraway relative what a doctor said, they struggle and fail because complex language was used and they don’t have a record.

Dr. Ryan told the New York Times that at some point in the near future, recording patient visits will become the norm. However, it may take 20 plus years to see this happening in every physician’s practice. Reasons for this delay include:

  • Physician resistance – The physician worries about violating the patient-doctor confidentiality agreement and does not want to worry about a malpractice lawsuit
  • Local wiretapping or eavesdropping laws – Under wiretapping or eavesdropping laws, 11 states (California, Florida, Illinois, Maryland, Massachusetts, Michigan, Montana, New Hampshire, Oregon, Pennsylvania and Washington) require that all parties must consent to being recorded.
  • Ownership of the recording – Who owns the recording and who will have access to these recordings and for what purposes?

In the United States, in 39 states and the District of Columbia, the law states that only one party needs to consent to be recorded. The Health Insurance Portability and Accountability Act states that legally, the patients can record their own visits.

Image of patient and doctor shaking handsAccording to the New York Times‘ article, “a review of 33 studies of recorded visits conclude that most patients listened to their recordings, shared them with caregivers and reported being better able to retain and understand information.” In a survey of 128 patients in Britain, Dr. Elwyn found that 15 percent of the patients recorded their doctor’s visit secretively via their mobile devices. Dr. Elwyn believes that such secretive action undermines the trust built between doctor and patient.

He concluded that the system should make recording an open practice but patients should be thoughtful about how they use the results and who they share it with. Patients need to know that they can hit “pause” at any point, should there be issues they don’t want others to know.

Dr. Ryan cautioned: “Such data [the recordings] – stripped of identifiers – could help researchers and future physicians improve medical communication. But the information might also be used for less welcomed purposes, like marketing campaigns.”

Success Stories 

  1. The University of Texas Medical Branch at Galveston buys recorders and batteries in bulk and offers them to patients at cancer clinics. Each year, since its implementation in 2009, around 300 cancer patients agree to use them. Dr. Meredith Masel, director of the Oliver Centre for Patient Safety and Quality Healthcare, hopes that these devices will soon be used in the internal medicine and geriatrics department.
  2. Dr. Randall Porter, a neurosurgeon at the Barrow Neurological Institute in Phoenix, uses videos of plastic models of the brain and spine to help patients understand their M.R.I scans. With the patient’s consent, Dr. Porter records the sessions on an iPad, then offers them the video to watch later on a web platform he founded called Medical Memory. He surveyed 333 patients and found that without recordings, patients forget 80 percent of the information given to them and about half watched their videos more than once. Most patients agree that it helps put them “at ease” about their medical condition. Since 2015, more than 400 doctors use Medical Memory – recording a total of 28,000 visits. Dr. Porter emphasizes that when patients bring a recorder, they are not “trying to catch us”, they’re just “desperate to remember everything we tell them.”

JointHealth™ Education: The Art of Communicating with your Rheumatologist

Arthritis Consumer Experts’ JointHealth™ Education contains useful “lessons” to help people living with arthritis learn to have more meaningful, fact-based conversations with their rheumatologists, other health care team members, families, friends and employers. To learn more, please click here.

Patient’s Comments to New York Times’ “The Appointment Ends. Now the Patient is Listening.”

“Note taking, including a family member or trusted friend at the clinical visit, or recording the consultation can help increase a patient’s understanding and retaining of information exchanged between them and their physician. These things are a clear indication to physicians that their patients actually care about what they are saying and doing for them, and can possibly help them improve their communication skills resulting in a better patient-physician relationship.

If we want “value” and “patient-centricity” in our health care systems, patients need to be able to understand, retain and refer back to important information and instructions given to them during clinical visits, and how they do it should be determined by them, not the physician. Otherwise, it is just another “top down” health care approach that disempowers, not empowers.” 

-Cheryl Koehn, Vancouver, B C, August 18, 2017

“Better than being recorded, doctor-patient discussions should be summarized in writing by the physician. My PCP writes up reports of my visits with him. The report is then securely available to me online via a health services network. Given the complexity of medical discussions with your doctor (assuming you have such discussions), a summary of the visit, written by the doctor in understandable terms should be part of the standard of care.”

-A Goldstein, PDX, August 18, 2017

“Over the past two months my husband developed two problems that required surgery. I accompanied him for all of his office visits and was present when his physicians spoke to him in the hospital. As an RN I knew I would be able to understand and retain complex medical information and instructions. But even with my background, some visits involved so much information, I actually wrote a summary immediately after the visit. My husband is an intelligent man without any cognitive impairment and he truly appeared to understand everything during the visits, despite his anxiety. Yet it was astounding how much he “mis-remembered” about what he was told. A recording would have been essential if he had been alone. I will suggest it for any unaccompanied office visits.”

-Kate, Sarasota, FL, August 18, 2017