Data and statistics dehumanize. It’s easy to forget the individual on a personal level when forming conclusions and decisions with numbers and words from clinical research. Information on paper is one-dimensional—far from what actual human beings are.
No two people are alike. We’re all shaped by many factors: age, gender, education, family, friends, personal finances, religion, culture, and healthcare environment, among others. Even for genetically identical twins, various factors in life contribute to each one’s individuality from the other. This is why, when it comes to treating fast moving diseases like lung cancer, personalized medicine is so important—because each patient's circumstances are very unique and understanding those differences is critical to a relevant treatment plan.
Unfortunately, our current healthcare system does not weigh these specific factors. Due to financial constraints in the industry and an increasing number of treatment options with complicated benefits and risks, healthcare systems have developed decision-making processes—also called frameworks—that depend on the black-and-white considerations that healthcare professionals have historically valued. The problem is, the current frameworks depend on factors that are too standard and don’t lead to the most effective decision-making. We can do better than this. Besides, when patients are provided with tailored treatment, a better use of resources results, too—something everyone can benefit from.
In a peer review article I helped to write—Patient value: Perspectives from the advocacy community—we detail the reasons why we need to pay more attention to the patient’s perspective when considering personalized treatment options. Although the clinician’s expertise and knowledge is obviously valuable, the patient’s priorities are sometimes different. Clinicians focus on factors that are objectively measureable—which is completely reasonable—but depending on the patient, he or she may value survival over a treatment’s side effects, more so than the clinician, or vice versa. These differences can have an impact on the treatment regimen.
Examples of differing values between patient and clinician are wide and varied. They can be as simple as an age consideration—for instance, a young patient may place top priority on survival, whereas an older patient may put more emphasis on the toxicity levels and symptoms of a treatment. Or, the decision-making process can get as complex as considering social or cultural factors, such as Korean Americans, African Americans and Hispanic patients being more likely to believe that the family should be involved in the decision-making process, while Caucasians may be more likely to value self-reliance, responsibility and control.
Drawing from the results of a recent survey done by Avalere Health, it appears that even health plans resonate with the need to include the patient perspective in treatment decision-making. Most plans do not use a black-and-white framework to decide on an option. In the name of cost reduction, plans approach the process more broadly—as in, some high-cost, short-term treatments will help to reduce long-term costs if the treatment is effective enough for fewer interventions down the line. Even clinicians often believe that individual patient circumstances are not necessarily best served by standard recommendations.
So what then are the practical steps to incorporating the patient perspective into existing frameworks? It must be driven by patients and advocacy groups who speak for patients around the world—not from an expert panel, because that wouldn’t be inclusive or representative enough of cancer patients. How do we do that? Here are the steps we propose in the peer reviewed article:
- Agree that including the patient perspective benefits all stakeholders and the clinical practice in general as well as the personalized treatment plan itself;
- Patients and their caregivers and advocates should be brought in on the treatment decision-making process at the very beginning rather than later, the very essence of personalized medicine;
- Develop new frameworks incorporating published research on patient preference; and
- Encourage a shift in language, such as from “clinically relevant” to “patient important” or “personal significance.”
Patients should always be the center of the treatment decision-making process. This includes designing frameworks so that they reflect values important to each individual patient. These values need to be provided by the patients and their advocates, rather than from an unrepresentative expert panel. It’s the right and compassionate thing to do.
Furthermore, even when budgetary constraints are recognized, it has been shown time and again that involving the patient not only results in better treatment plans and health outcomes, it also leads to a better use of resources. Personalized medicine built upon a foundation that begins with an understanding of patient values in the decision-making framework may not be as simple as using standardized factors, but it is the more effective—and right approach—for all stakeholders.