A Research Roadmap: Connected Health as an Enabler of Cancer Patient Support

Abstract

The evidence that quality of life is a positive variable for the survival of cancer patients has prompted the interest of the health and pharmaceutical industry in considering that variable as a final clinical outcome. Sustained improvements in cancer care in recent years have resulted in increased numbers of people living with and beyond cancer, with increased attention being placed on improving quality of life for those individuals. Connected Health provides the foundations for the transformation of cancer care into a patient-centric model, focused on providing fully connected, personalized support and therapy for the unique needs of each patient. Connected Health creates an opportunity to overcome barriers to health care support among patients diagnosed with chronic conditions. This paper provides an overview of important areas for the foundations of the creation of a new Connected Health paradigm in cancer care. Here we discuss the capabilities of mobile and wearable technologies; we also discuss pervasive and persuasive strategies and device systems to provide multidisciplinary and inclusive approaches for cancer patients for mental well-being, physical activity promotion, and rehabilitation. Several examples already show that there is enthusiasm in strengthening the possibilities offered by Connected Health in persuasive and pervasive technology in cancer care. Developments harnessing the Internet of Things, personalization, patient-centered design, and artificial intelligence help to monitor and assess the health status of cancer patients. Furthermore, this paper analyses the data infrastructure ecosystem for Connected Health and its semantic interoperability with the Connected Health economy ecosystem and its associated barriers. Interoperability is essential when developing Connected Health solutions that integrate with health systems and electronic health records. Given the exponential business growth of the Connected Health economy, there is an urgent need to develop mHealth (mobile health) exponentially, making it both an attractive and challenging market. In conclusion, there is a need for user-centered and multidisciplinary standards of practice to the design, development, evaluation, and implementation of Connected Health interventions in cancer care to ensure their acceptability, practicality, feasibility, effectiveness, affordability, safety, and equity.

Understanding the Experience of Cancer Pain From the Perspective of Patients and Family Caregivers to Inform Design of an In-Home Smart Health System: Multimethod Approach

“…The primary limitation of this study is the sample size, which reduced generalizability and precluded our ability to detect statistical significance in our analysis of variable impact scores. However, our sample size is consistent with the scope of a pilot study related to early stage smart health design [ 33 , 53 , 54 ] and the aims of qualitative research [ 51 , 52 , 56 ] and provides an important rural perspective. Our initial intent was to interview all dyads together, but this proved difficult/impossible due to logistical constraints.…”

“…Our overall sample, although equally split between males and females, had a disproportionate number of female caregivers and, although not racially or ethnically diverse, represents a geographically underserved sample, as the majority of patients were from rural areas of Central Virginia (consistent with the general demographics of the cancer center recruitment study site). We recruited a final sample size of 22 individuals, which is consistent with the pilot, qualitative, and early stage smart health design work [ 33 , 51 - 60 ] and the aims of our study to explore proof of concept of the BESI-C system with end users and better understand the experience of cancer pain at home.…”

“…Although the literature richly describes the experience and consequences of poorly managed cancer pain within the home setting [ 4 , 5 , 24 , 25 ], gaps exist in understanding real-time, dynamic contextual factors that may worsen or mitigate the experience of cancer pain from the perspectives of patients and family caregivers [ 4 , 15 , 26 - 30 ]. Smart health (eg, wireless/mobile technology and user interfaces) is increasingly being utilized to improve remote symptom monitoring and management [ 31 , 32 ], but it is not always designed with meaningful end-user input [ 33 ] and may not be appropriate or feasible for the unique needs of patients and caregivers coping with the stressors of advanced, late-stage illness, limiting its ultimate utility and effectiveness [ 34 , 35 ]. Relatedly, ever-evolving technological capabilities can capture a large range of data, but it is not always clear which variables, especially environmental, are most essential and how they should be prioritized [ 30 ].…”

Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

“…The increasing amount of user-generated information has become a valuable resource to guide health interventions and advance our knowledge of a variety of health conditions [ 28 ]. The data can be analyzed and built upon, allowing researchers to better understand user characteristics, social and information needs, and communication ecosystems as well as to serve the demographics being studied [ 29 - 32 ]. Such applications include, but are not limited to, the identification of individuals at risk for depression [ 33 ], the detection of drug-drug interactions or adverse side effects [ 34 ], the examination of health behaviors in various types of cancer survivors [ 35 , 36 ], and the investigation of the impact of social media on decision making and recovery in prostate cancer patients [ 37 , 38 ].…”

Understanding the Experience of Cancer Pain From the Perspective of Patients and Family Caregivers to Inform Design of an In-Home Smart Health System: Multimethod Approach (Preprint)

“…Although the literature richly describes the experience and consequences of poorly managed cancer pain within the home setting [4,5,24,25], gaps exist in understanding real-time, dynamic contextual factors that may worsen or mitigate the experience of cancer pain from the perspectives of patients and family caregivers [4,15,[26][27][28][29][30]. Smart health (eg, wireless/mobile technology and user interfaces) is increasingly being utilized to improve remote symptom monitoring and management [31,32], but it is not always designed with meaningful end-user input [33] and may not be appropriate or feasible for the unique needs of patients and caregivers coping with the stressors of advanced, late-stage illness, limiting its ultimate utility and effectiveness [34,35]. Relatedly, ever-evolving technological capabilities can capture a large range of data, but it is not always clear which variables, especially environmental, are most essential and how they should be prioritized [30].…”