“The patient with power is here to stay” and the health care system needs to adapt to allow those who are more committed to their own care, a patient advocate said.
Liz O’Riordan, a breast surgeon consultant and breast cancer survivor, knows first-hand what it’s like to diagnose a disease and let yourself navigate the sea of information available to patients.
O’Riordan, who is one main speaker to the next Virtual Digital Health Summer School, she was diagnosed with third-stage breast cancer in July 2015 at age 40. Two weeks after his diagnosis, chemotherapy had begun. During his nine months of treatment he also had surgery and radiation therapy.
As a retired breast surgeon consultant, it would be easy to assume that her career had prepared her better to be a patient, but the reality is no.
It was only through his own journey as a patient that O’Riordan realized the amount of information available to patients and the importance of having control over their own medical data and their health journey.
“Despite training my whole life to become a breast surgeon, I knew nothing about what it was like to be patient,” she told Digital Health News.
“I used to say to people, ‘Don’t Google, it’s scary, I’ll tell you what you need to know.’
“And it’s rubbish because the first thing I did in the car was as a breast surgeon consultant [after her diagnosis] went to Google.
“Don’t go to the NHS 111, don’t go to your doctor’s website, go to the internet to really know what it’s like.”
O’Riordan’s experience led her to start her own blog and co-write “The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control.” He told Digital Health News that the Internet had “exploited” the amount of information available now to patients, but that there was no way to control what information patients access.
“When you have a chronic illness, you’re really invested in your illness, you know everything, you want that information,” he said.
“I think that’s why we need to educate patients … if you’re worried, here’s a list of safe websites for easy answers.
“The patient with power is here to stay, and the doctor-patient relationship will change because of that.
“And we need to help all patients have access to digital health and digital literacy, and we need to learn for ourselves what our patients need to help them better.”
Data ownership
O’Riordan, whose husband is a member of the CCIO and a member of the Digital Health Network CCIO Advisory Panel, said access to the information had caused patients to be more engaged in their healthcare journey and want to access their own data.
“It’s about the ownership of the data. When I had an MRI, you have to wait three weeks for a result and the result just tells you it’s normal, but you don’t get a full copy because the doctors think you might not understand it or you don’t need to know . , “she said.
“But I’m the one who has had to spend 40 minutes lying face down listening to Justin Bieber and I want to be able to read the full results.
“It’s like going to the bank and saying,‘ How much money is in my account ’and hearing‘ Oh, you’re on credit ’… yes, but how much? We wouldn’t stand it, but with our body we’re not allowed to know -ho ”.
Patient participation in their own healthcare journey also results in better digital health tools. O’Riordan stressed that investing in computing and digital health tools would be “useless” if patients were not taken into account in the design.
“Unless you have patients involved from the beginning, you may be making an amazing product, but it doesn’t really work for anything,” he added.
“Patients know what they need and if you haven’t had this disease, you may end up on the wrong path.
“You have no idea what it’s like to be patient until you’ve walked on their skin. Every now and then, listen to someone … just realize the gap between what you tell patients and what they really need. “
Liz O’Riordan recently participated in an episode of Digital Health Unplugged that explored the importance of including patients in the digital journey. The episode will be released on July 27th.
He is also the keynote speaker at the 2021 Virtual Digital Health Summer School, which will take place on July 15-16.
The full the program is available here. There is still time to do it sign up to attend the event, you can do it here.
