Data collection challenges in community settings: insights from two field studies of patients with chronic disease

Abstract

Purpose Collecting information about health and disease directly from patients can be fruitfully accomplished using contextual approaches, ones that combine more and less structured methods in home and community settings. This paper's purpose is to describe and illustrate a framework of the challenges of contextual data collection. Methods A framework is presented based on prior work in community-based participatory research and organizational science, comprised of ten types of challenges across four broader categories. Illustrations of challenges and suggestions for addressing them are drawn from two mixed-method, contextual studies of patients with chronic disease in two regions of the US. Results The first major category of challenges was concerned with the researcher-participant partnership, for example, the initial lack of mutual trust and understanding between researchers, patients, and family members. The second category concerned patient characteristics such as cognitive limitations and a busy personal schedule that created barriers to successful data collection. The third concerned research logistics and procedures such as recruitment, travel distances, and compensation. The fourth concerned scientific quality and interpretation, including issues of validity, reliability, and combining data from multiple sources. The two illustrative studies faced both common and diverse research challenges and used many different strategies to address them. Conclusion Collecting less structured data from patients and others in the community is potentially very productive but requires the anticipation, avoidance, or negotiation of various challenges. Future work is necessary to better understand these challenges across different methods and settings, as well as to test and identify strategies to address them.

Field-Based Human Factors in Home and Community Settings

“…For example, a team investigating mobile health tools for use by older patients with Alzheimer's disease might need to study patients, family members, home care nurses, therapists, and pharmacists, over several months and in settings as diverse as patients' homes, retail pharmacies, and community centers. They might encounter recruiting challenges, concerns about safety during home visits, resistance from community stakeholders, and difficulties disseminating findings to participants (Holden et al, 2015a;Thomson et al, 2014). Holden and colleagues (2015a) examined the practical and scientific challenges encountered in two studies using human factors methods in home and community settings.…”

Unfurling the PhD process: A reflexive account of key stages and strategies

“…Changes were required due to the painful realities I faced on the sites. Several authors document the challenges they have encountered in the field (Hobbs & Kubanyiova, 2008;Holden, Mcdougald Scott, Hoonakker, Hundt, & Carayon, 2015;Mercer, 2007;Mukeredzi, 2012;Rimando et al, 2015;Roth, Shani, & Leary, 2007). These challenges include difficulties to access the participants, poor conditions and challenging locations of sites, worries when dealing with sensitive information, and researchers' fatigue.…”

“…Because several stakeholders in Mauritius were not familiar with researching, gaining access to the various educational institutions and departments was difficult. Moreover, obtaining teacher's consent was challenging, especially when intending to observe them in their natural settings and envisaging to use their private documents as also stressed by Holden et al (2015).…”

Introduction to special section on patient engagement

“…Adding an important pragmatic layer to theory, Holden et al [2] offer a framework for dealing with challenges of community-based participatory research. The authors offer a thoughtful enumeration and suggestions for navigating a range of challenges.…”