Patient value: Perspectives from the advocacy community

Abstract

All health‐care systems are under financial pressure and many have therefore developed value frameworks to assist decision making regarding access to treatment. Unfortunately, many frameworks simply reflect the clinically focused values held by health‐care professionals rather than outcomes that also matter to patients. It is difficult to define one single homogeneous set of patient values as these are shaped by social, religious and cultural factors, and health‐care environment, as well as many factors such as age, gender, education, family and friends and personal finances. Instead of focusing on an aggregated set of values, frameworks should attempt to incorporate the broader range of outcomes that patients may regard as more relevant. Patient advocates are well placed to advise assessment bodies on how particular therapies will impact the patient population under consideration and should be closely involved in developing value frameworks. In this paper, a group of patient advocates explore the varying definitions of patient value and make positive recommendations for working together to strengthen the patient voice in this area. The authors call on framework developers, the patient advocacy and research communities, the health‐care industry and decision‐makers to undertake specific actions to ensure patient value is included in current and future value frameworks. This is justified on compassionate and economic grounds: better health outcomes result when patients receive treatment tailored to individual needs. Paying attention to the patient perspective also results in better use of resources—a goal that should appeal to all stakeholders.

Patient Survey of the Physical, Emotional, and Informational Challenges for Patients Living with Neuroendocrine Tumors

“…Insights from this survey into the experience of living with NETs reveal issues, beyond clinical measures, that affect the well-being of patients with this condition and indicate the treatment outcomes that these patients desire. This understanding may contribute to future assessments of the holistic value of treatments and may also aid physicians in involving patients in disease-management decisions to optimize care [1,2].…”

“…In recent years, frameworks have been developed to assist with decisions on access to treatment; however, such frameworks tend to attach greater importance to the clinically focused values of healthcare professionals than to outcomes that also matter to patients [1]. In recognition of the importance of connecting patient experience with clinicians' understanding, patient-reported outcomes (PROs) are becoming increasingly popular, as described in a recent systematic review by Yang et al While it has been suggested that analyzing data from standardized PROs can improve patient-doctor dialog, symptom management, care satisfaction, and quality of life [2], further research is needed to understand how much the use of PROs can affect symptom awareness and patient outcomes.…”

Mediator – enabler for successful digital health care

“…These intermediaries, domain-specifically mediators, are individuals who possess a specific set of skills and abilities that enables them to operate in the crux of health care, individual, and technology. Even though there are different intermediaries, such as patient advocates [47] already operating in the field of health care, they operate primarily on the provider-side, and the patient-side intermediaries are practically nonexistent -more so if the focus is on domain technologies, such as patient portals [48].…”

Including the patient voice in the development and implementation of patient‐reported outcomes in cancer clinical trials

“…Finally, in discussion with their research partners on AEs, patients and patient advocates are able to support the necessity of disseminating full AE data so that individual patients can make informed choices. Some patients may be prepared to tolerate greater AEs than others based on age, stage in their patient journey and other factors . Patient‐reported AE data are increasingly accepted or solicited by regulatory and HTA bodies and can play a key role in their decision making .…”