When marketing consultant breast surgeon Liz O’Riordan was identified with breast most cancers, she turned to know-how so she wouldn’t “should undergo most cancers alone”.
O’Riordan’s highly effective opening speech at this yr’s Digital Health Virtual Summer School (VSS) was a reminder that know-how isn’t only a instrument to profit clinicians, it’s additionally a instrument to empower sufferers.
In 2015, O’Riordan was identified with stage three breast most cancers and underwent 9 months of chemotherapy, radiotherapy and surgical procedure. Throughout that point she didn’t meet one other breast most cancers affected person “within the flesh” however turned to know-how which she mentioned “saved my life”.
“For me, know-how ensured that I didn’t should undergo most cancers alone,” she instructed the VSS viewers.
“It’s a very scary place if you’re going by means of a most cancers prognosis and until you’ve had most cancers you possibly can’t perceive what it’s like.
“I didn’t meet one other breast most cancers affected person within the flesh by means of my 9 months of chemo, surgical procedure and radiotherapy, it was by means of Twitter.
“I instructed Twitter I had most cancers they usually reached out to me.”
O’Riordan, who has since retired as a marketing consultant breast surgeon after a recurrence in 2018, mentioned digital well being can “dramatically change” the physician, affected person relationship.
She inspired the viewers to see digital well being as a “proactivity driver”.
“Know-how is altering sufferers lives and, like me, it’s serving to many change into an skilled affected person.
“You can too use digital well being to assist sufferers assist themselves, by means of self-monitoring. It means you, as a clinician, get correct dependable knowledge, which is so vital for trials and research.”
Entry to info
However with know-how and the flexibility to empower the affected person comes the necessity to share info, O’Riordan defined.
Talking of her personal frustrations of not having the ability to see her full check outcomes when going by means of most cancers, she mentioned sufferers want entry to their very own knowledge.
“To empower a affected person, they want entry to info and information, correct medical info to allow them to make their very own thoughts up,” she mentioned.
“Additionally they want entry to their well being groups. By having the ability to electronic mail them and speak, you possibly can scale back the burden of admission, scale back clinic visits that may very well be solved in a fast electronic mail. Additionally they want entry to their very own knowledge.
“As a health care provider I assumed I ought to management how a lot info sufferers obtained about their outcomes. I knew what was good for them, they wouldn’t perceive the scary phrases.
“However as a affected person I needed to know all the pieces, I deserved to know all the pieces. If I didn’t perceive it I’d Google it… it’s my physique, it’s my knowledge.”
Affected person portals are making it simpler for sufferers to entry their knowledge, O’Riordan added, however extra must be accomplished to construct the connection of belief to reassure sufferers that medical doctors are utilizing their knowledge safely, and entry to their knowledge will assist them.
‘Don’t do to, do with’
O’Riordan’s opening keynote was adopted by Professor Mary Dixon-Woods, director of The Healthcare Enchancment Research Institute, and Tara Donnelly, chief digital officer at NHSX.
Dixon-Woods reiterated the necessity to empower sufferers with know-how, including that digital instruments ought to be designed with the customers in thoughts.
“Don’t assume you already know what’s greatest, design collectively and be guided by a extremely participatory, inclusive ethos,” she mentioned.
Dixon-Woods added that “collaboration is essential” when designing and implementing know-how in healthcare.
Donnelly supplied the VSS viewers with an replace on NHSX’s work throughout the pandemic, together with myriad of labor round distant monitoring.
“That is far more than digital consultations,” she mentioned.
Giving examples of sufferers who’ve engaged with distant monitoring companies and managed their well being with out being admitted to hospital, Donnelly added that it gave sufferers peace of thoughts.
“Quite than digital feeling extra distant, right here it was actually providing individuals a reassurance they have been being noticed whereas in their very own dwelling,” she mentioned.
“Liz spoke concerning the want for digital well being to be a proactivity driver, and handing individuals accountability again for their very own well being and giving them info that may assist with that’s crucial.”
Liz O’Riordan lately took half in an episode of Digital Well being Unplugged wanting on the significance of together with sufferers within the digital journey. The episode will probably be printed on July 27.
The Digital Well being Summer time Faculty 2021 is going down on July 15 and 16. The free digital occasion is unique to NHS and Public sector members of the Digital Well being Networks solely.