Developing and testing the ExerciseGuide UK website for people with lung cancer: reflections on the added value of patient and public involvement within a doctoral degree

Abstract

Plain English summary This commentary describes how patient public involvement has been used to adapt a website called ExerciseGuide UK. This website provides a personalised physical activity program and education to those diagnosed with lung cancer. The programme is altered to allow for each patient’s capabilities. Reflections on how the study affected both the researcher and the PPI members are discussed. The commentary gives the patient and public involvement members a voice in their involvement experience. It highlights the difference that their sustained involvement made to the study, the doctoral researcher, and those who were involved. Globally, lung cancer is a leading cause of cancer-related death and remains one of the most common types of cancer. Digital technology, such as websites, mobile applications, and smart wearable devices (e.g., Apple Watch and Fitbits), have increasingly been used in health research over the last few decades. Since the beginning of the COVID-19 pandemic in 2020, research into digital technology has increased rapidly. Individuals diagnosed with lung cancer may experience a large number of physically and emotionally limiting symptoms, such as a higher risk of severe illness due to infections. With the large symptom burden they experience, digital technology may provide alternative and more accessible methods which can be altered to suit and help their specific needs. The patient and public involvement group members had all either been diagnosed with lung cancer, cared for someone with lung cancer, or experienced lung cancer in their family.

Keywords

• Patient and public involvement
• Digital health
• eHealth
• Usability
• Co-design
• Lung cancer