The Power and Impact of The Patient Perspective
Last updated: June 2023
I had the chance to sit at one of the annual Zoom meetings where an oncologist encouraged patients living with lung cancer to spread awareness and hope. He said patients could make an impact to increase research funding, push early screening, and increase treatment options. I agree that the patient perspective can be used for different purposes relevant to patients’ cancer care.
Looking for the patient's perspective: exploring cancer groups
Pushing for change is one of the reasons why I join general cancer and lung cancer support groups. One unique thing about these groups, they put first the importance of cancer awareness. They make time to discuss with government representatives about issues and access to cancer treatment. I have seen patients with lung cancer volunteer and serve in these groups. They stand with their conviction and demand immediate action.
Joining lung cancer support groups
What's more relevant is coming together with patients in the city or state where you live. I'm fortunate the local cancer care agency has psychosocial patient services. What a good way to come together with people living with lung cancer! The atmosphere creates a feeling of being understood. There are other support groups that prioritize their presence throughout the journey of their members.
Making politicians aware of cancer care issues
Cancer care is not perfect. There are flaws and loopholes. COVID made it even worse. In the city where I live, the health care system has been overwhelmed. Reduction in lung cancer statistics may mean less people seek screening or treatment. Having the chance to speak my views with politicians was an eye opener. There is power when cancer patients work together for action.
Check out international lung cancer associations
Educating myself about prognosis and survival for lung cancer is part of my journey. There are a number of organizations I follow and read their current research findings. Among them are ASCO (American Society of Clinical Oncology), ESMO (European Society for Medical Oncology), TOGA (Thoracic Oncology Group of Australia), and IASLC (International Association for the Study of Lung Cancer). I hope to continue being able to have an interest in their articles and sit in on webinars to gain more knowledge.
Exploring patient involvement in research
I know that my role as one of the patient leaders has great impact on patients living with lung cancer. Moreover, I see other patient involvement that promotes the improvement of patient health services. In addition, there is a growing trend of patients’ active involvement in lung cancer research. Patients have become partners in cancer research.
Being a partner in lung cancer research
I am a recipient of medical and clinical research related to lung cancer. Understandably, the belief that “science is for scientists” pose a barrier in patient involvement in medical research. It is obvious an expert cannot work and share ownership of his work with a non-expert. However, the clinical research has more patient involvement. This is one area I still have to seek more exposure and unveil my skills.
Beside manner matters! What has your experience been?