Patient Engagement, Events

This is what empowered patients desire on their journey

During a November 6 breakout session at MedCity ENGAGE, panelists shared that patients should be their own advocates, be part of their care team and stay informed.

The healthcare industry spends plenty of time talking about financial costs, innovative approaches and the latest and greatest technologies. This can sometimes lead to a crucial stakeholder — the patient — being left out of the equation.

During a panel at MedCity ENGAGE on November 6, patients and experts discussed what patients truly want as well as strategies to help improve their experience.

Moderator Dan Housman, managing director and CTO of ConvergeHEALTH, kicked off the discussion. In addition to working in the healthcare realm, he sees the patient experience firsthand in that his daughter was diagnosed with anorexia last year. An empowered patient, Housman said, makes sure they’re heard and listened to.

Agnes Berzsenyi, the president and CEO of women’s health at GE Healthcare, said empowerment starts with being informed.

Three patient panelists also voiced their thoughts on patient empowerment.

Taylor Carol was 11 years old when he was diagnosed with terminal cancer and given two weeks to live. Twelve years later, he’s a Harvard graduate and the chief strategy officer of ZOTT, a patient engagement technology company. The key, he said, is to give patients “agency in an environment where agency has typically been ripped away entirely.”

When Dana Dinerman was 34, she was diagnosed with stage 3 breast cancer. At the time, she was scared and relied on the doctors for information. Her advice to patients is to be your own advocate. “It’s OK to ask questions,” said Dinerman, who is the founder of Hulabelle Swimwear, which she started after finding it challenging to find a bathing suit after undergoing a mastectomy.

Thacher Hussain, a software developer and a type 1 diabetic, said it’s important to come to your doctor with questions, concerns and your own hypotheses. “I would like to be able to be treated like an equal member of my care team,” she said.

It’s clear that empowerment is multi-faceted and takes strength and determination. But what would the panelists say to a patient who isn’t empowered and is facing hurdles to getting the care they need?

Dinerman, who has been battling breast cancer on and off since her original diagnosis, said that she’s been in that very position. She advised such patients to ask their doctors for help and to go online and meet other people who are undergoing a journey similar to their own. “I learned as time went on not to be so scared of cancer,” she noted.

Hussain seconded the point about meeting fellow patients on the internet. “I have made some of my best diabetic friends on Twitter,” she said.

Photo: DrAfter123, Getty Images