Good things can happen when patients get access to their images and reports, and there's no justifiable reason not to provide patients with the opportunity to be more involved and engaged in their own care, said Dave deBronkart, also known as "e-Patient Dave," in a talk on participatory medicine and getting patients and physicians on the same page. What's more, physicians can share the burden of care with their patients, he said.
A co-founder of the Society for Participatory Medicine, deBronkart shared his experience of becoming an informed and engaged patient after being diagnosed with stage IV renal cell carcinoma.
Participatory medicine principles
DeBronkart offered his four foundational principles for participatory medicine:
Knowledge is power. Or more accurately, knowledge enables power. There's also a corollary: It's perverse to keep people in the dark and call them ignorant, DeBronkart said. In medicine, some believe that patients don't know anything and therefore shouldn't have access to that information.
"That's the way it works when people say patients can't handle this information -- [i.e.,] don't let them see their charts or images," he said.
People can perform better when they're better informed.
However, information alone doesn't change behavior.
When assets digitize, things change fast. Don't get caught as an expert in the expired reality.
"Don't get stuck in an obsolete mental bottle," he said. "You have to look below the surface and see why have things been constrained in the way they are."
A cancer patient's journey
DeBronkart's kidney cancer was discovered after a routine shoulder x-ray in 2007. While the shoulder was fine, a spot showed up in his lung as an incidental finding. Subsequent imaging studies revealed the diagnosis of stage IV renal cell carcinoma -- a disease with a median survival of 24 weeks.
After his primary care doctor suggested signing up for an online community of patient peers, deBronkart learned from other patients a number of facts about the therapy he was prescribed -- high-dose interleukin-2 (HDIL-2) -- that had not been shared with him by his healthcare providers. For one, HDIL-2 only works sometimes, and when it does, it's a permanent cure only half the time.
He was also told that the side effects can be severe, which helped him prepare for the treatment. Fortunately, the therapy worked.
"How can it be that the most useful and relevant and up-to-date information can possibly exist outside of the channels where we were trained to look?" deBronkart said.
Because of the internet, patients can find information and connect with each other. And social media can serve as "capillaries" through which information can travel to the point of need without centralized planning, making new things possible, he said.
Patient perspective on radiology
In preparing for his SIIM 2018 talk, deBronkart reached out to his Facebook community of patients to ask them if they had any stories in which having access to their images helped. He received several anecdotes, including one from a woman in Sweden who requested access to her x-ray that showed a fracture in her toe. After receiving the images on a CD in the mail, downloading a DICOM viewer, and exporting the images to JPEG files, she showed them to her chiropractor, who was then able to provide specific advice for self-care that she didn't get from her doctor, deBronkart said.
A patient from Canada reported that having access to her own images saved her life. After uploading her MRI for a second opinion at Johns Hopkins University, a physician recommended that she fly the next day to the U.S. for treatment of her hydrocephalus. In addition, a mother noted that having access to radiology reports enabled her to uncover a crucial missed issue on her daughter's liver ultrasound reports for a two-year period, ultimately resulting in the diagnosis of an Abernethy malformation.
While some radiologists might say that their patents aren't asking for access to their images and reports, deBronkart said this is often how it goes with culture change.
"Don't get stuck being a proud expert on obsolete beliefs," he said.
He noted that opponents to women's suffrage said that 90% of women weren't even asking for voting rights.
"What happens is that people are skilled and competent at an old reality, and when something new comes along it's like an elephant with bluebird wings," he said. "It's like, this just doesn't fit ... and cognitive dissonance sets in."
He advised SIIM 2018 attendees to think ahead about what's possible.
What can radiologists do?
How can radiologists and imaging informatics professionals help? By being leaders and spreading the word that the tipping point for access to medical images and information is here, according to deBronkart.
"Make sure everyone you encounter at every radiology shop knows about HIPAA's access rights," he said. "Everybody is afraid of HIPAA's privacy penalties, but I get to have copies of my data -- no questions asked. I might have to pay some nominal fee, but I've had doctors' offices insist that I sign a release for them to give me my data."
Also, spread the word to other professions that good things can happen when patients see their images, and promote the speedy release of image data, he said.
"When somebody wants their data, please be quick," he said. "William Gibson, the futurist, once said, 'The future is here; it's just not evenly distributed yet.' "
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