Advocating for Inclusion of the Patient’s Voice

By Lori L. Alexander, MTPW, ELS, MWC
Posted: December 2017

Since 2006, the Bonnie J. Addario Lung Cancer Foundation (ALCF) has brought together a diverse group of physicians, organizations, industry partners, and individuals, along with patients, survivors, and their families, to identify solutions and to make timely and meaningful changes in the research and management of lung cancer. Arising from the experience of its founder, Bonnie Addario, a stage IIIB lung cancer survivor, ALCF has become one of the largest philanthropies focused on lung cancer, raising more than $40 million to fund lung cancer research and deliver programs to patients since its inception.

Among ALCF’s most important goals are to empower individuals with lung cancer through education and to ensure that the patient’s voice and perspective are integrated into all aspects of research and patient care. Among Ms. Addario’s latest initiatives is an article to address the need to integrate the patient’s voice into value frameworks developed by healthcare systems to assist in decision-making regarding access to treatment. Collaborating with other patient advocates and advocacy groups, Ms. Addario recently published the article, Patient Value: Perspectives from the Advocacy Community.1

“All frameworks around the world working on healthcare must include the patient voice,” says Ms. Addario. “The patient voice is mandatory to address the delivery of great patient healthcare. Patients around the globe want to live as long as possible and want to be part of the solution regarding access to all the possibilities.”

Ms. Addario and her coauthors note that many value frameworks reflect traditional clinical and economic values held by healthcare professionals without inclusion of outcomes that are relevant to patients. She notes that patient advocates should also be involved in the process because of their knowledge and perspective on how specific treatments will affect the patient population under consideration.

“Anyone who designs a program to sell products must involve the customer in the design. The customer in healthcare is the patient, and patients can be the change agents from development to delivery and simultaneously help to save millions of dollars in healthcare costs,” says Ms. Addario.

In the article, Ms. Addario and her coauthors explore the varying definitions of patient value and make positive recommendations for working together to strengthen the patient’s voice in the development of frameworks. The authors call on framework developers, the patient advocacy and research communities, the healthcare 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,” they write.

The call to action for the research community is to advance methodologies for recording, quantifying, and assessing patient values, including in randomized controlled trials, and sharing these methodologies through publication to build an evidence base.

The ALCF has strong ties to the global research community and generously supports innovative research through fellowships across multiple cancer types, including the ALCFIASLC Fellowship Award for the Early Detection of Lung Cancer. ALCF also works in tandem with the Addario Lung Cancer Medical Institute (ALCMI), established in 2008, a patient-centric international research consortium composed of more than 23 member institutions in the United States and Europe. ✦

1. Addario BJ, Fadich A, Fox J, et al. Patient value: perspectives from the advocacy community. Health Expect. 2017 Sep 20 [Epub ahead of print].