Chasing the value of a walk down the aisle
Can you quantify the value of moments that matter? How patient experiences change the equation.
Seeing the sum of all parts
When his grandfather broke his hip, Brett Pinsky questioned the value of repairing it.
At work, Pinsky, a health economics and outcomes researcher at AbbVie, calculates the value of different medical decisions. Knowing on a professional level how patient experience must be weighed alongside more static information on risks and benefits, he initially thought that hip surgery may not be in his grandfather’s best interest.
“My grandfather had Alzheimer’s, and at the time he broke his hip, his life expectancy was only around three months,” he says. “I thought it might be better not to put him through surgery when it wouldn’t meaningfully extend his life or allow him to walk again, and instead just make him comfortable with medication.”
But then, Pinsky factored in how his grandfather’s dementia was affecting the situation: because he couldn’t remember breaking his hip, his grandfather kept trying to stand up, causing him terrible pain – making surgery the better option after all.
“At least when he went to get up, the pain wasn’t from moving a broken bone, but rather post-operative stiffness and soreness,” Pinsky says. “That’s the impersonal nature of numbers, versus understanding what’s going on in real life. It changes the value equation.”
While the stakes aren’t usually this personal, Pinsky is faced with these complex equations every day – and understanding the real-world experience of patients like his grandfather is one of several essential components that must be taken into account if the true value of a medical intervention is to be defined.
Value and the patient experience
Value is typically assessed through mathematical equations, but it’s hard for most of us to see how the impersonal absolutes of math can adequately inform emotion-driven decisions about life and death.
For example, what dollar amount would you put on a few more months of life that will allow you to walk your daughter down the aisle?
Whether we’re thinking about life’s major milestones or mundane daily activities, health economics and outcomes research (HEOR) needs to carefully consider the value of these moments.
Despite being data-driven scientists and therefore unlikely to admit it, it could be argued that HEOR professionals use shades of philosophy and sociology to add context to their calculations.
Even with a seemingly clear-cut tool like the utility approach, a measurement to assess quality of life often used in clinical trials, understanding the human face of the data is vital.
Patients are asked to rate their tolerance of treatment adverse events, using a scale of zero to one. However, measuring utilities may be tricky as different patients may produce different results.
“If I’m an Olympic athlete and my life revolves around running, I may rate severe knee pain as a 0.3, meaning highly debilitating. But, let’s say the person is a violinist and can sit in a chair while they do and what they love. For them, it is still a terrible burden, but they may score it as less debilitating. Different people have different values,” says Anthony Wang, U.S. immunology – gastroenterology lead, HEOR, AbbVie.
Uncommon denominators
Medicines have always been judged primarily on safety and efficacy. However, as measuring patient experience has become an increasingly important piece of the value puzzle, the field of HEOR has become integral.
Measuring the patient experience involves pairing patient reported outcomes (PROs) – data coming directly from the patient about their health – with clinical data.
For example, a patient whose clinical data show a three-point, statistically significant reduction in swelling may be considered a positive outcome.
“However, if those three points are dropping a patient from bad to still bad as measured by their PRO, it may not be as meaningful to the patient despite being statistically significant,” Pinsky says.
The big picture
HEOR looks for the good of the whole, examining large patient populations to assess value.
“We work with both clinical trial data and real world evidence to determine the value of medicines,” Wang says. “This requires gaining insight about key issues from patients, physicians, as well as payers.”
Take Pinsky’s experience with his grandfather’s broken hip.
Had he had done an economic analysis, Pinsky would have had a difficult time showing a payer that hip surgery would be cost effective. But there were clearly more factors to consider in defining the value of an intervention than cost-effectiveness alone – and recognizing these factors are what HEOR does best.
“Ultimately, our goal is to show how patients’ lives are changed for the better,” Wang says. “At the end of the day, understanding the value of a medicine is about the patients’ journey, their story.”
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