CAC Member Profile: John Lewis

He’s the new kid on the block, but Consumer Advisory Committee ("CAC") member John Lewis isn’t wasting any time getting involved. 

An information systems specialist and cancer survivor, John joined the CAC in April this year after hearing about the TCRN through his PhD research. 

“I first found about it because I’m actually doing a PhD in UNSW on the characteristics of information systems that can support cancer survivors in primary care, rather than in hospitals or acute care settings,” he said.

“What I find is that the information systems that support primary care are really not very good – they’re very fragmented. Really, in this day and age, it should be a lot easier, and the information systems should be able to support a more, a greater continuity of care. And that’s really not happening.”

It’s an issue that’s close to his heart – during his treatment for colorectal cancer, John had first-hand experience of the pressure that patients experience due to a lack of seamless IT infrastructure.

“The patient, the cancer survivor, is responsible for things like taking referrals or blood test results around, and often the survivors will repeat their story ad nauseam to different health professionals,” he said.

“[In many cases, patients] have to go through this horror of saying they’ve got these metastases here or this here and that their chances are this, and having to go over that all the time is really quite distressing for a lot of people.”

This personal experience combined with his research expertise and background in IT will inform the way that John contributes to his work with the CAC. Having attended his first meeting in early May, he’s still in the process of getting up to speed with TCRN research opportunities but believes that there are already some clear pathways for contribution that will make the most of his skill set. 

“Certainly I think I can advise from a consumer’s perspective on research projects to manage cancer survivors in primary care. I’ve got experience in that colorectal area, so I could look at that,” he said.

“I’d also be interested to help researchers deal with the non-medical aspects of the care, such as the psychosocial aspects – things like anxiety and depression and the effects of chemotherapy, which can last for years.” 

 If there’s one thing John believes that researchers need to know, it’s that having cancer is not the sum total of the cancer patient experience.

“Often researchers, because of the way medicine is organised, will focus on a particular aspect of care, such as the effect of a new drug or cell biology,” he said. 

“But they also need to realise that it’s attached to a real person, and I think often that can be overlooked. 

“People are more than their disease.”