ABSTRACT
BACKGROUND: Lung cancer has one of the highest incidence and mortality rates worldwide. Physical activity can provide those diagnosed with lung cancer with several physical and psychological benefits. However, the examination of digitally delivered physical activity to those with lung cancer is not as researched as other common cancers. Often, those diagnosed with lung cancer are older adults (65 years or older). Older adults are often wrongly assumed to lack digital skills, interest, and not engage with digital technology regularly. Although individuals are interested, would involving older people in designing of websites and apps result in better engagement? MAIN BODY: In this article, the authors discuss the process of adapting a digital platform with a patient and public involvement group to provide those who have received a lung cancer diagnosis with a tailored physical activity program and health educational modules. We discuss the influence of recurrent patient and public involvement on the study, the patient and public involvement members, and the doctoral researcher. CONCLUSION: Working with a patient and public involvement group over several months, especially potential users of a digital intervention, may enhance its relevance, accessibility, and usability. By engaging with patients, family, or caregivers for someone with lung cancer, the doctoral student gained insight into the needs of the study population and what to consider during development. All group members expressed their interest and enjoyment in their involvement, and several are now active members of a wider patient and public involvement network.
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.
ABSTRACT
INTRODUCTION: Between September 2012 and December 2015, a series of national and regional consultations, aimed at resolving a persistent dynamic of conflict between law enforcement agencies (LEAs) and civil society organizations (CSOs) working on issues of access to HIV services in high-priority countries for people who use drugs have been organized by the HIV/AIDS Section of the United Nations Office on Drugs and Crime, the Joint United Nations Programme on HIV/AIDS, the Law Enforcement and HIV Network (LEAHN) and other international organizations. The aim of these consultations has been to understand, at a national and regional level, the key points of tension between police and CSOs and how to overcome these tensions to enhance access to and uptake of services by key populations, including people who inject drugs, sex workers, men who have sex with men and transgenders. This commentary briefly describes the methods, process, content and key outcomes of these consultations held across diverse number of countries and regions, including Africa, South East Asia, South Asia, Central Asia, Eastern Europe and Latin America. DISCUSSION: While the context varies, this paper highlights that there are commonalities that drive a persistent dynamic of conflict and therefore also common methods for resolution of conflict and forging partnerships. Both policing and CSOs have key sectoral responsibilities and reform agendas to implement to ensure that as an individual agency they are able to meet their obligations as partners in the HIV response. Using the key outcomes of discussions and recommendations from these consultations and drawing on existing literature, the objective of this paper is to present a preliminary model that roadmaps the critical path from resolution of conflict to partnership between LEAs and CSOs. CONCLUSIONS: This paper seeks to highlight that critical resources are required to support ongoing development and harnessing of partnerships between LEAs and CSOs and argues that these resources should not just come from global HIV funding mechanisms but should be part of a more mainstreamed security sector reform agenda that understands the mutual benefits that programming for human rights-based policing reform would have on HIV, development and security.
