Lung Cancer Clinical Trial Awareness

Interview with Jennifer C. King, PhD, Director, Science and Research, Lung Cancer Alliance

 

The Lung Cancer Alliance (LCA) is the oldest and leading non-profit organization dedicated to saving lives and advancing research in the field of lung cancer. LCA advocates for research funding and reimbursement to patients for treatment for lung cancer. They offer nationwide educational campaigns to educate and support lung cancer patients, families and caregivers. LCA’s website contains a great deal of information about the biology of lung cancer, types of lung cancer, lung cancer research, lung cancer treatments including managing side effects, clinical trials for lung cancer and treatment centers.

LCA also offers a great deal of support for lung cancer patients and families. They have a HelpLine, a “Phone Buddy” program, a “Guides” program for families and caregivers and a “LCA Unite” mobile app for iPhone and Android:  that helps connect patients to one another, offers 24/7 support via live chat and offers local resources, including support groups and treatment centers.

Jennifer C. King, PhD is the Director of Science and Research for the Lung Cancer Alliance. Jennifer is responsible for leading scientific and research initiatives that improve the lives of lung cancer patients and those at risk for lung cancer

I talked with Jennifer about her role at LCA and what her perspectives were on clinical trial awareness and patient participation.

Jennifer explained that LCA is focused on patient support, information and referral services for lung cancer patients and caregivers. Located in Washington DC, they work with policy-makers to help promote awareness and increase survivorship for lung cancer. Jennifer is working on increasing the LCA research portfolio, building an in-house research staff, partnering with other organizations and the LCA Screening Centers of Excellence. Historically, LCA has not funded research directly but has worked extensively with other organizations to that end, including the development of the first ever Lung Cancer Research Program within the Department of Defense.

LCA currently offers patients information on finding clinical trials by working with the Lung Cancer Clinical Trial Matching Service powered by EmergingMed. This service allows patients to work with a Clinical Trial Navigator who creates a list of appropriate trials and then emails or mails them directly to the patient.

LCA also offers information on clinical trials and questions to ask when considering a clinical trial. They also have a brochure, Understanding Lung Cancer Clinical Trials that can be printed or downloaded.

I asked Jennifer how patients and patient advocacy groups can do their part to help promote awareness about clinical trials and she replied, “Talk about it! Everyone needs to be talking about it and helping to spread the word. Patients need to talk about trials with their medical team early in their treatment discussions. Providers need to offer trials to patients. Patients need to know what questions to ask. Doctors need to have the information to answer patient questions.”

Jennifer emphasized that caregivers are a critical audience. She added, “Caregivers are often the ones going online and doing the research.” These caregivers need support and information also. Patient advocacy groups need to include them actively in the discussion and offer them the information they need.

I asked Jennifer what information, support or program she thought was the most effective in succeeding in increasing patient awareness in trials. King answered that it was critical to have diverse programs and types of support and information in order to reach different groups of people. “There are many different demographics within the lung cancer patient population. It takes a lot of different programs to reach everyone. So many of our programs interplay with each other and having different ways to reach different audiences is really critical.”

If you are a lung cancer patient or the caregiver, family member or loved one of a lung cancer patient, please visit the Lung Cancer Alliance website. They have a great deal of useful and helpful information available. And please reach out to those in your lung cancer community who are not so tech-savvy and help them, so that they can take advantage of all the resources available. Less tech-savvy patients and caregivers are also encouraged to call LCA’s HelpLine where they can speak to someone directly who can answer questions and provide support.