(worth reading) Editorial: The Values and Value of Patient-Centered Care -- Epstein and Street 9 (2): 100 -- Annals of Family Medicine

"The originators of client-centered and patient-centered health care were well aware of the moral implications of their work, which was based on deep respect for patients as unique living beings, and the obligation to care for them on their terms. Thus, patients are known as persons in context of their own social worlds, listened to, informed, respected, and involved in their care—and their wishes are honored (but not mindlessly enacted) during their health care journey.^2–6 There have been concerns that patient-centered care, with its focus on individual needs, might be at odds with an evidence-based approach, which tends to focus on populations. Fortunately, that debate has been laid to rest; proponents of evidence-based medicine now accept that a good outcome must be defined in terms of what is meaningful and valuable to the individual patient.⁷ Patient-centered care, as does evidence-based medicine, considers both the art of generalizations and the science of particulars.⁸"

What Patients Value When Oncologists Give News of Cancer Recurrence: Commentary on Specific Moments in Audio-Recorded Conversations -- Back et al. 16 (3): 342 -- The Oncologist CME Online

fig 1

Note: full access after registration (free), study design used 'standardized' patients

Definitions of standardized patient:
A simulated patient or standardized patient (SP) (also known as a patient instructor), in health care, is an individual who is trained to act as a real patient in order to simulate a set of symptoms or problems. ...
en.wikipedia.org/wiki/Standardized_patient

Of Value: A Discussion of Cost, Communication, and Evidence to Improve Cancer Care -- The Oncologist

Uncertainty in Assessing Value of Oncology Treatments -- The Oncologist

abstract:
Patients, clinicians, payers, and policymakers face an environment of significant evidentiary uncertainty as they attempt to achieve maximum value, or the greatest level of benefit possible at a given level of cost in their respective health care decisions. This is particularly true in the area of oncology, for which published evidence from clinical trials is often incongruent with real-world patient care, and a substantial portion of clinical use is for off-label indications that have not been systematically evaluated.
It is this uncertainty in the knowledge of the clinical harms and benefits associated with oncology treatments that prevents postregulatory decision makers from making accurate assessments of the value of these treatments. Because of the incentives inherent in the clinical research enterprise, randomized control trials (RCTs) are designed for the specific purpose of regulatory approval and maximizing market penetration.
The pursuit of these goals results in RCT study designs that achieve maximal internal validity at the expense of generalizability to diverse real-world patient populations that may have significant comorbidities and other clinically mitigating factors.
As such, systematic reviews for the purposes of coverage and treatment decisions often find relevant and high-quality evidence to be limited or nonexistent. For a number of reasons, including frequent off-label use of medications and the expedited approval process for cancer drugs by the U.S. Food and Drug Administration, this situation is exacerbated in the area of oncology.....

"Until scientific advancements in treatment occur, significant gaps in real-world evidence will be pervasive in the area of oncology. This situation has negative consequences for a variety of players in health care, from patients and physicians to payers and policymakers. Addressing these gaps would result in better decisions that improve patient outcomes and reduce unnecessary costs."

How Should We Define Value in Cancer Care? - The Oncologist

CA 125: Value or addiction?. Patricia A. Goldman. 2010; Cancer

Note: journal article by paid subscription

Commentary

CA 125: Value or addiction?

Patricia A. Goldman, BA *

President Emerita, Ovarian Cancer National Alliance, Washington, DC

^*Correspondence to Patricia A. Goldman, Ovarian Cancer National Alliance, 910 17th Street, NW, Suite 1190, Washington, DC 20006; Fax: (202) 331-2292

Abstract

The author challenges a recent study indicating that there is no apparent benefit in routinely measuring cancer antigen 125 (CA 125) in the follow-up of women with ovarian cancer.

full free access: How to integrate individual patient values and preferences in clinical practice guidelines? A research protocols

Background: