#ASCO14: Patients Should Be at the Center of the Value Proposition

#ASCO14: Patients Should Be at the Center of the Value Proposition

05.31.14 | By

Yesterday, ASCO held a panel entitled, “Can We Find Common Ground? Stakeholder Perspectives on Value in Cancer.” At the tail end, a woman stepped to the mike to make an observation to the panelists. Describing herself as a patient and an advocate, she declared that she heard little in the presentations about patient-reported outcomes, particularly in reference to ASCO's value initiative that is in the works.

 

The woman went on to suggest that patients should be at the center, not on the outside, in discussions around value and related methodologies.

 

Lowell Schnipper, MD, Beth Israel Deaconess Medical Center, who chairs the ASCO Task Force on Value in Cancer Care and earlier provided an overview of the ongoing work towards developing a model for defining value in cancer care, assured the questioner that patient advocacy groups have been and will continue to be included in the ongoing discussions - and that patient-centric measures would be part of the valuation measure. That said, he also suggested that her comment was the most important during the two+ hour session.

 

I wouldn't disagree with this sentiment – and I suspect neither would Diane Blum, executive director of CancerCare, an organization that provides support to people facing the challenges of cancer.

 

Ms. Blum provided the patient perspective of value on the panel. She started off talking about the various definitions of value, landing on one from Scott Ramsey in The Oncologist: “An intervention in cancer care can be described as having value if patients, their families, physicians and health insurers all agree that the benefits afforded by the intervention are sufficient to support the total sum of resources expended for its use.”

 

Value for the patient is a “dynamic process”

 

What’s appealing here, Ms. Blum explained, is the “total sum of resources.” When it comes to assessing value for a patient, one needs to take a global perspective, looking at “everything in the patient’s environment.”

 

Ms. Blum described value as a “dynamic process” that evolves as a patient’s hopes and expectations change through the course of a cancer diagnosis and treatment. It must be assessed regularly and discussed with a patient.

 

She also maintained that for some patients there is value beyond the clinical response in simply trying. “If I don’t try I just won’t forgive myself, my family won’t forgive me – it’s really important that I do everything.” This is a powerful and personal dynamic that’s hard to argue with but also difficult to reconcile within our current mindset of cost-containment.

 

Failure to discuss costs can lead to non-adherence

 

When it comes to physicians discussing cost with patients, Ms. Blum noted how difficult and emotional it may be, but also pointed to the benefits of early engagement on the topic – including one that really stood out: the notion that most discussions around cost currently take place after a patient is non-compliant with their medicine.

 

That said, we may have a ways to go before discussions on cost are a routine part of care. The reality is we know relatively little about patients' preference for discussing costs with their oncologist, as well as patients’ perceptions about the relationship between cost and quality.

 

When patients consider costs in their decisions, out-of-pocket costs are generally of greatest interest. However, there is a wide range of health care benefit designs in the market, and out-of pocket costs are often unrelated to the cost incurred to provide the service or treatment or its clinical benefit.

 

What’s more, a survey conducted by the Institute of Medicine Roundtable on Value and Science Driven Health Care found that patients want a trustful, respectful relationship with their provider in which the evidence and options for treatments are discussed. However, the survey also found that the majority of patients do not want their provider to filter options or make choices for them.

 

I’ve focused on some of Ms. Blum’s thoughts because I believe such perspectives are critical – and often overshadowed – in the broader discussions about cost and value. I’ve also been reading some of the opinions in this week’s Conversations forum on ways we can promote patient-centered cancer research and care in an era of increasing pressure to control healthcare costs, so the theme is front of mind.

 

A couple other patient-centric highlights

 

In setting the tone for the panel, Neal Meropol, MD, University Hospitals Case Medical Center, observed that our current health system is unsustainable for several reasons, including the high out-of-pocket costs increasingly imposed on patients (check out similar observations by our own John Castellani in “The Hill).

 

And Dr. Schnipper, in his opening remarks, noted that focusing solely on cost “demeans the purpose for which we all gather here, which is to improve patient care for those afflicted with the most devastating diseases.” Indeed, channeling Michael Porter of Harvard, Dr. Schnipper observed that “patient centeredness” is key to the value equation being pursued by ASCO.

 

As my colleague Randy Burkholder observes in a recent Catalyst post, “the value of a medicine typically varies considerably from patient to patient” due to many factors. Looking ahead at continued dialogues, we must ensure that assessments of value reflect the needs and preferences of individual patients, and keep pace with changes in medicine and research.

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