Pharmafile Logo

The Power of Patient Insights to Improve Cancer Care

Two global patient advocacy groups—The Lymphoma Coalition and Lung Cancer Europe— are compiling data from their communities on the real-world experience of living with cancer. What the data reveals sometimes challenges existing protocols around cancer care.

- PMLiVE

The role of The Lymphoma Coalition is to “generate and provide trusted information, knowledge, and best practices to influence and improve care” for those affected by the disease, says Lorna Warwick, the coalition’s CEO.

Our mission is to be the voice of Europeans impacted by lung cancer, says Anne-Marie Baird, president of Lung Cancer Europe.

Though they are advocating for patients with different types of cancer, these two inspiring healthcare leaders have a shared passion: to ensure that the patient voice, and patient insights, are integrated into the current knowledge base in order to improve cancer care.

Collecting insights from patient communities—through global surveys, working groups, annual gatherings, focus groups, or community advisory boards—provides valuable learnings from those living with these diseases as well as their family members and caregivers.  And sometimes those learnings yield data that differs from that of academic researchers.

Warwick recalls sitting at a congress “and being invited to bring the patient perspective using our data and having this really intense discussion—disagreeing with a leading clinical expert in the area of discussion—and feeling confident because I had the data to counter him and say, ‘No, that’s not actually what the patients are telling us. There’s a gap here that needs to be addressed.’ ” And then having other doctors come up to her later and saying they want to change clinical practice based on her presentation.

Some issues that patients grapple with—nausea, fatigue, fear and anxiety, depression, body image—may be ones that doctors have minimized in previous patient conversations since they’re focused more on medical outcomes. So patients try to handle those things on their own. Warwick says that for optimal care it’s important to have those discussions about how patients are feeling. “I say this to doctors all the time: If you add one thing to the conversation with your patients it’s just to ask them, ‘What’s the one thing that’s really bothering you right now?’” What would improve your quality of life?

Warwick knows this can open up a can of worms because patients may bring up things that are totally outside of a doctor’s comfort zone. But, that doesn’t mean that we still don’t need to have the conversation and help them, she says. What Warwick wants clinicians to know is that advocacy organizations have great resources to give the patients the support that they need, and to have a better experience overall despite the medical outcomes of their disease.

 As well as educating policy makers, academic researchers, and clinicians, Baird says her pan-European Organization also tries “to develop tools to equip members to do things at a national level. We want people who are able to help to build capacity, to educate, to help create awareness.” We need expert patients to have a seat at the table with pharma, for clinical trials, protocol developments, whatever it might be, Baird says. Not just at the end to develop patient advocacy leaflets. So they need to be comfortable knowing the terminology and with the conversation so they can bring their “real world, lived experience” into the mix.

This is the 2nd in a two-part conversation with Lorna Warwick, CEO, The Lymphoma Coalition and Anne-Marie Baird, President Lung Cancer Europe. To listen to Part I, click here. Hosted by Victoria Harvey-Jones, Associate Director of Clinical Strategy at Medscape Oncology Global.

To read Medscape Oncology’s white paper on patient centricity and improving cancer outcomes,  click here.

Follow us for updates on upcoming podcasts and more insightful conversations.

For more information, please contact Jelena Spyropoulos (Global) or Piyali Shin (US).

 

About Medscape Education Medscape Education (medscape.org) is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free accredited CME and CE courses for physicians, nurses, and other healthcare professionals.

This content was provided by Medscape Education

Company Details

 Latest Content from  Medscape Education 

Advancing Education at AASLD 2024

Get ready for an exciting experience at AASLD 2024! The Medscape team is thrilled to be in San Diego from November 15-19 for this year’s AASLD conference, where we will...

Recognizing C diff Awareness Month in 2024

Every year, the medical community recognizes the month of November as Clostridioides difficile (C. diff) Awareness month. C. diff is a public health threat that causes around 500,000 infections every...

Medscape Education presenting at the 17th Annual European CME Forum

With a commitment to advancing the field of continuing medical education, the Medscape team will be travelling to Madrid for the 17th Annual European CME Forum and bringing with them...

Sex, Gender, and the Brain: The Women’s Brain Foundation and Medscape Education Announce Groundbreaking Learning Centre

LONDON--(BUSINESS WIRE)--The Women’s Brain Foundation (WBF), the global pioneer that has advanced the inclusion of sex- and gender-based evidence-generation in all research, drug development, and healthcare since 2017; and Medscape...

Cultivating Interest in Infectious Disease Education at ID Week 2024

IDWeek starts tomorrow, October 16, and Medscape is bringing outcomes and education! We are excited to announce Medscape is presenting six posters that highlight the significant impact of our educational...

Medscape Education Breathes Life Into Pulmonology: Showcasing Success at CHEST 2024

Medscape Education showcases its strong track record in providing high-quality education in the field of pulmonology at the annual conference of the American College of Chest Physicians in Boston, Massachusetts,...

Successful Education at ESC

With World Heart Day just having passed (29th September), Medscape wants to take the opportunity to look back and recap what was accomplished at ESC 2024.  At this year’s event,...

How women are revolutionising rare disease

Women have played a crucial role in rare disease awareness and better care, overcoming gender biases and systemic challenges to drive progress in this often-overlooked field.

Gaps in obesity care and education

Yesterday marked World Heart Day, and Medscape is at the forefront with a featured article in Media Planet's cardiology campaign highlighting gaps in obesity care and education. This important piece...

Realizing the Potential of Virtual Patient Simulation With Real-World Outcomes

We're celebrating Healthcare Simulation Week 2024 by highlighting the transformative power of our multi-award-winning medical simulation programs, which have proven impact in delivering significant improvements in clinical skills and outcomes....