Bringing the Whole Person into Precision Medicine

For oncology clinicians and practices who want to meet the new standards for more patient-centered cancer care, they need to do a better job of engaging patients more fully in their care planning and make patient-reported outcomes an integral part of cancer treatment research.

The good news is that patients are “data altruists,” who are for the most part happy to share information and want to be involved in this process, according to acclaimed researcher Patricia Ganz, in her plenary talk opening the 2015 World Congress on Psycho-Oncology held July 30-August 1 in Washington, D.C.

The international meeting marked the first time the American Psychosocial Oncology Society and the International Psycho-Oncology Society have hosted a joint conference, attracting more than 900 individuals from 49 countries.

Ganz serves as director of Cancer Prevention and Control Research and the Patients and Survivors Program Area at UCLA’s Jonsson Comprehensive Cancer Center and has been a major voice in Institute of Medicine (IOM) studies, including serving as chair of the committee behind the seminal 2013 IOM report, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis.”

Many factors are driving this crisis, noted Ganz, including a projected 30 percent increase in the number of cancer survivors by 2022 and a growing shortage of healthcare professionals to treat them. Both trends are being fueled by the aging of baby boomers and their retirement from the healthcare workforce, each occurring in the context of an increasingly complex — and costly — care environment.

“Workforce is a key issue,” Ganz told her audience. “We’re going to need more of you,” adding that healthcare practitioners should be able to practice at the highest level of their training.

Among the IOM report’s key recommendations, said Ganz, is that patients and family members be centrally involved in a high-quality cancer care system, and that assessing and addressing their psychosocial health needs be an integral component of care plans.

To achieve this, patients and their families need understandable information about their prognosis, the benefits and the harms of treatment, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of care.

And, these information needs are a two-way street. Just as patients need more quality information and psychosocial support, researchers need to integrate patient-reported outcomes into their research which traditionally has been more disease-focused.

Ganz said that studies have shown that patients’ self-reports are very good predictors of their health, and she urged audience members to advocate for inclusion of patient-reported outcomes in research studies:

“It’s really important that we be at the table … so outcomes are patient-focused as well as disease-focused.” She acknowledged that raising the level of outcomes may cost a little bit more but can provide greater value in the long run.

Survival is the main outcome, but other outcomes, such as the time it takes to return to normal activities and the sustainability of recovery, should be incorporated, as well as the “desired outcomes that patients really want,” said Ganz — these all contribute to the value proposition.

Yet, clinicians may be asking: How are we going to obtain those patient outcomes in the clinic?

Ganz said that many electronic tools have been developed to help. “I think we’re going to see the day — probably in the very near future — where patients are going to be filling out these kinds of electronic tools in between their visits, so when they come to see their doctor and we say, ‘how are you feeling today,’ we can get a whole spreadsheet looking at how they’ve been rating their fatigue, their pain, their sleep… so it isn’t just what they can remember in the last seven days.”

“Patient engagement is critical for improving patient-centered care and quality of care, Ganz said, reminding attendees that their roles as clinical members of oncology care teams is “more important than ever.”

When asked by an audience whether she was sorry to see the nomenclature shift from “personalized”medicine” to “precision” medicine, Ganz replied:

“We as a community need to bring that whole person into precision medicine.”