Being part of the conversation: Turning patient engagement to patient centricity

After three brushes with cancer, Robert Weker understands the patient journey more than many – and he is determined to put that experience to good use.

The avid blogger and passionate advocate retired from his R&D role four years ago to focus on his own health, and now works to make sure the patient voice is always heard when pharma companies make decisions.

Winding road

"My journey is a bit complicated, because I am a three-time cancer survivor,” said Robert, 60, who lives just outside of Philadelphia in the United States.

“First, it was testicular cancer, back in 1991, then I was diagnosed with liposarcoma in 2010, and pancreatic cancer in 2014.”

The cancers were discovered early, and, while he did experience treatment side effects, things were “manageable”, he said.

“I don’t want to minimise cancer in any way, shape or form, but the testicular cancer was caught early, and the treatment success rate was well over 90%. It was more of an ‘inconvenience’. It was like entering a tunnel, but you could already see the light at the end.

“The liposarcoma was a little but different, but it was still caught pretty early and there was a high survival rate. Neither of the cancers significantly disrupted work.”

Despite also being diagnosed early, however, the pancreatic cancer was a “completely different ball game”.

“At that time, the five-year survival rate was around 7%. So, when I entered that tunnel, it was pretty dark.”

Robert decided to enrol on a clinical trial of chemotherapy plus high dose vitamin D at the University of Pennsylvania. Afterwards, he had to fight for the proton beam radiation therapy his radiation oncologist recommended as his insurance company considered it to be experimental.

“I was told my policy didn’t cover it. Even though my entire medical team was saying we can’t do normal radiation because of the significant exposure during the previous cancers. My body wouldn’t have been able to handle it.

“I am not a passive patient, so I kept calling and calling and finally they said there was a review panel,” said Robert, adding that he was shocked to find the panel did not include a radiation oncologist. “Even the voice of my doctor, who is at the top in his field worldwide, was being totally muted.”

After a number of reviews and appeals and countless phone calls, the treatment was finally approved but it had taken six weeks and many headaches.

Part of the conversation

His experiences have made him realise the importance of the patient voice being front and centre.

“There are two strands at play. Patients need to be part of the entire journey, influencing design and sharing their insights with all the stakeholders – pharma companies, regulators, physicians, payers.

“On an individual basis, I want to be engaged as a patient on my medical plan. I want to ‘own the approach’ for me.”

His broad ambition, he said, is to get medicines and medical solutions that are more accessible, more affordable, and available in a more timely, more patient friendly way.

Explaining why patients were an essential part of that mission, he said: “Everyone is driven by different goals and different stakeholders will have different drivers of what’s important.

“We need to determine how to get these different stakeholders aligned, so that we are all going in the same direction in unison."

Levelling up

Robert, who works with several pharma companies on a variety of projects, believes that the industry is going on the right track, but that there is still some way to go.

Describing three levels of patient engagement, he said: “The first one is engaging the patient. That might be calling a patient or group of patients in to review a consent form or a trial protocol on a one-off basis. They will ask them if it seems reasonable, feasible, or overly burdensome, then incorporate those comments.”

The second level is more like a patient partnership, he said, using his position as member of a pharma company’s Oncology Patient Council as an example.

“We meet once a month throughout the development cycle to provide feedback. We engage with them on challenges they might be facing, or on specific topics such as patient diversity. It’s a continuous process – a feedback loop – not a one-off interaction,” said Robert.

Most organisations, he said, were currently “somewhere between levels one and two” but the next step is true patient centricity, which Robert described as “putting the patient at the centre of the wheel”.

“What that looks like in practice is ongoing involvement and engagement with the patient throughout, a truly individual patient tailored approach,” he said, adding that it included making sure interventions were as easy to access geographically, logistically, and physically, as possible.

“It all goes back to this idea of being part of the conversation. Of course, not all patients can be there, but if I can share the insights I have gained from my own journey, under the caveat that all patients are different, then at least they have heard what I have to say,” Robert concluded.

Patient Insights is a monthly series that appears in partnership with Inspire, a company with an online support community of more than 2 million patients and caregivers worldwide.