The Power of Patient Insights to Improve Cancer Care
May 30, 2024 | Women in healthcare, medical education, oncology, podcast
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.
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 Global
Company Details
Latest Content from Medscape Education Global
Empowering Nurses Through Education
Nurse education is powerful and makes an impact.
Pioneering Paths: Women Leadership in Rare Disease
Rare diseases are often thought of as affecting one in 100,000 or one in 1,000,000 people, and that is true for some conditions. But there are many rare diseases that...
TRANSFORMING CME IMPACT: MEDSCAPE’S GAME-CHANGING APPROACH
It’s time for the CME industry to evolve. During recent years, access to data, modern technologies, and methodologies have allowed for deeper analysis of data and a better understanding of...
Why Women in Medicine Should Embrace Social Media
Of course social media has its downside. But online platforms are a powerful tool for women in medicine in terms of forming communities, fighting misinformation, amplifying one another, and galvanizing...
Exceptional Impact Presented at ECCMID 2024
The ECCMID conference in Barcelona, Spain marked the start of Medscape’s publication season in Europe. With three posters being presented at the conference, Medscape shared highlights from the powerful impact...
Showing Deep Expertise at ONS
The Medscape Oncology team will be connecting with the oncology nursing community this week in Washington, DC for the ONS Congress 2024. Medscape Oncology has deep expertise in the oncology...
MEDSCAPE’S NEW AGE OF CERTAINTY FOR CME
The CME industry is changing. More than ever, activities need to be prioritized and measured to increase their impact on patient outcomes. Improving patient outcomes is the core objective for...
Getting Past the Old-Fashioned View of Patient Advocacy
Patient advocacy organizations today are data-driven, doing amazing work — and have the hard evidence to support their impact on patient care. The challenge is getting past the perception of...
Mile High Impact at AAN 2024
The Medscape team will be joining our neurology colleagues in Denver, CO for this year’s AAN Annual Meeting. Impact will take center stage at this year’s event as Medscape presents...
Everything Was Peachy at ACC 2024 in Atlanta, GA
The annual ACC meeting has officially wrapped up in Atlanta, bringing a successful conference to a close for another year. During the conference, members of the Medscape team hosted a...