Power to patients: the role of scientific literacy


Andrew Ciupek, PhD (Lung Cancer Alliance)

Andrew is the Manager of Clinical Research with Lung Cancer Alliance (LCA). His role is to connect people to clinical trials. Prior to joining LCA, Andrew worked as a cancer research scientist at several institutions, including Baylor College of Medicine, Medical University of South Carolina, and the University of Maryland Greenebaum Cancer Center. He received a PhD in Cancer Biology from Baylor College of Medicine and a BS from the University of Maryland Baltimore County. We spoke with Andrew to discuss how scientific literacy impacts lung cancer patients.

What’s the value of scientific literacy to lung cancer patients?

In the past three to four years, new treatments have been introduced and FDA approvals for lung cancer have happened at a pace that was unheard of even five years prior. This is a certainly a time of great hope for those affected by lung cancer. However, one constant message from all this research is that lung cancer is not just one disease – knowing what makes your lung cancer unique is essential to picking the most appropriate treatment. By understanding what the results of research mean for your own diagnosis, then you can make better, more informed decisions about your own care.

The speed of lung cancer research advancements coupled with the increasing complexity of treatment options can be difficult for any one person to follow. That’s why lung cancer treatment takes a team where everyone works together. By having a better understanding of what new drug approvals and lung cancer research means to you as a patient you can feel empowered to be an active member of your own treatment team.

What can patients do to improve their scientific literacy?

First and foremost – ask questions! If you don’t understand a term used by a doctor or why they have chosen to do one treatment or test over another ask to find out. You are all on the same team and you should be an active member. Sometimes, it can be hard to get all your questions out during the appointments you have, but there are a number of other resources you can engage with as well to get answers. For example, lung cancer advocacy organizations can be a valuable partner. Most have a helpline that you can call to ask questions about treatments and your diagnosis. This can really be a great help in getting answers and preparing for what to ask at your next appointment. Also, look to see if your local clinic has educational talks or events geared toward lung cancer patients.  Many have doctors, nurses or other patients who come to these events and give information and perspective to those that attend. You can also look to see if there are local lung cancer support groups that meet at your clinic in your area where patients can connect with and learn from others dealing with a similar diagnosis. Using multiple resources is important – everyone presents information in a different way and one source may help you more than another.      

Social media and websites are a popular source of (mis)information – where should patients start when looking online?

The internet has allowed patients and caregiver to connect with each other and find information in many ways. This is great news for our community, but with the volume of information being shared it can be hard to determine what is most relevant to you and what is misleading or inaccurate.

Stick to websites that have expertise in writing accurate information for patients. Great places to start are the websites of patient advocacy organizations. For example, Lung Cancer Alliance, has a number of educational materials on their website covering various treatment options, side effects management, and much more. Many major cancer centers also have well written guides on their websites. When reading about lung cancer or a treatment option in the news or another website check these expert sources for their perspective and more information. For instance, the National Cancer Institute of the National Institutes of Health runs a website that writes patient-focused guides on complementary and alternative treatments (https://www.cancer.gov/about-cancer/treatment/cam/patient). They present what we know about them, the side effects and even give a list of questions to ask your doctor.

Social media is a great place to connect with other patients and caregivers. Fortunately, there are a number of online communities and Facebook groups created or run by lung cancer patients that monitor what information is shared and who posts there   

These types of sources can help you better connect to other patients who share your exact diagnosis or treatment plan.

Last but not least – before you make any decisions always discuss it with your doctor – they know the most about your diagnosis and can help determine if a something is a good option for you.

What is the role of patient advocacy groups in supporting patients’ scientific literacy?

Advocacy organization can be great sources of information and connections to resources for patients. Many cancer groups, like Lung Cancer Alliance, run a HelpLine where patients or loved ones can call in and get personalized information on a diagnosis or treatment options. Some even have navigators that are experts in lung cancer research and treatments that can help explain what new developments mean for your unique diagnosis and prepare you to ask the best questions at upcoming appointments. Advocacy organizations also publish educational materials explaining important topics in lung cancer research and treatment in a way that is geared towards patients. They also often have a blog and social media accounts that you can follow to get timely updates on lung cancer news.

Perhaps most importantly, these organizations can connect you to resources based on whatever you need. They often work to keep track of things like treatment centers or local support groups and can connect you to these local sources for information. Some organizations also work closely with lung cancer survivors and organize events to connect patients together or set up one on one opportunities for a more personal conversation.

How can doctors, industry and advocacy groups work together to help patients better understand the science behind their conditions?

Partnerships and sharing expertise is important. Clinicians, researchers, industry and patient advocacy groups all have expertise in different areas that can be leveraged to help patients in the best ways possible. For instance, by combining the expertise an advocacy organization has  from interacting with the patient community with Industry’s knowledge of new treatment advances and resources, more effective  educational campaigns can be developed that are better tailored to patient needs and more likely to reach them.

Veeva: Z4-12820
Date of Prep: 19/09/2018
Date of Expiry: 19/09/2020