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The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences.

ABSTRACT: BACKGROUND:Health consumers are often targeted for their involvement in health research including randomized controlled trials, focus groups, interviews, and surveys. However, as reported by many studies, recruitment and engagement of consumers in academic research remains challenging. In addition, there is scarce literature describing what consumers look for and want to achieve by participating in research. OBJECTIVE:Understanding and responding to the needs of consumers is crucial to the success of health research projects. In this study, we aim to understand consumers' needs and investigate the opportunities for addressing these needs with Web-based technologies, particularly in the use of Web-based research registers and social networking sites (SNSs). METHODS:We undertook a qualitative approach, interviewing both consumer and medical researchers in this study. With the help from an Australian-based organization supporting people with musculoskeletal conditions, we successfully interviewed 23 consumers and 10 researchers. All interviews were transcribed and analyzed with thematic analysis methodology. Data collection was stopped after the data themes reached saturation. RESULTS:We found that consumers perceive research as a learning opportunity and, therefore, expect high research transparency and regular updates. They also consider the sources of the information about research projects, the trust between consumers and researchers, and the mobility of consumers before participating in any research. Researchers need to be aware of such needs when designing a campaign for recruitment for their studies. On the other hand, researchers have attempted to establish a rapport with consumer participants, design research for consumers' needs, and use technologies to reach out to consumers. A systematic approach to integrating a variety of technologies is needed. CONCLUSIONS:On the basis of the feedback from both consumers and researchers, we propose 3 future directions to use Web-based technologies for addressing consumers' needs and engaging with consumers in health research: (1) researchers can make use of consumer registers and Web-based research portals, (2) SNSs and new media should be frequently used as an aid, and (3) new technologies should be adopted to remotely collect data and reduce administrative work for obtaining consumers' consent.

SUBMITTER: Pang PC

PROVIDER: S-EPMC6234342 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences.

Pang Patrick Cheong-Iao PC Chang Shanton S Verspoor Karin K Clavisi Ornella O

Journal of medical Internet research 20181030 10

<h4>Background</h4>Health consumers are often targeted for their involvement in health research including randomized controlled trials, focus groups, interviews, and surveys. However, as reported by many studies, recruitment and engagement of consumers in academic research remains challenging. In addition, there is scarce literature describing what consumers look for and want to achieve by participating in research.<h4>Objective</h4>Understanding and responding to the needs of consumers is cruci ...[more]

PMID: 30377139

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Project description:BackgroundPersistent inequities in health experiences and outcomes are observed for Māori compared to non-Māori in Aotearoa New Zealand. We conceptualised factors associated with Māori consumer experiences of health programs and services and characterise how the recommendations arising from qualitative research inform strategies to address inequities.MethodsIn this systematic review, electronic literature searching was conducted in February 2018. Qualitative studies reporting Māori consumer experiences of health services and programs in Aotearoa New Zealand were eligible. Māori consumer experiences of health services were mapped to the WHO Commission of Social Determinants of Health (CSDH) conceptual framework on health inequities as related to: (i) the socioeconomic and political context; (ii) socioeconomic positioning; or (iii) intermediary factors that increase exposure to health-compromising conditions. Recommendations to improve consumer experiences were mapped to the CSDH framework for tackling social determinants of health inequities as policy directions on: (i) unequal consequences of illness (individual interaction); (ii) risks of exposure to health-damaging factors (community); (iii) exposures to health-damaging factors (public policies); and (iv) mitigating effects of socioeconomic and political stratification (environment).ResultsFifty-four studies were included. Māori consumer experiences mapped to social determinants of health inequities were most frequently related to direct interactions with health services and programs, particularly patient-clinician interactions (communication, relationships) and cultural competencies of clinicians and the system. Key recommendations by researchers mapped to potential strategies to address inequity were identified at all levels of the political, social and health system from individual interactions, community change, and broader public and system-level strategies. Recommendations were predominantly focused on actions to reduce risks of exposure to health-damaging factors including health literacy interventions, increased resources in cultural competencies and Māori capacity in health service development and workforce.ConclusionsMāori consumer experiences of health services and programs are an important informer of variables that impact health inequity. Strategies to tackle health inequities informed by Māori consumer experiences can be drawn from existing empirical research. Future qualitative exploration of how socioeconomic, political and public policies influence Māori consumer experiences of health services and programs could inform a broader range of structural policies to address health inequities.

Project description:The sequence of events in a behaviour change trial involves interactions between research participants and the trial process. Taking part in such a study has the potential to influence the behaviour of the participant, and if it does, this can engender bias in trial outcomes. Since participants' experience has received scant attention, the aim of this study is thus to generate hypotheses about which aspects of the conduct of behaviour change trials might matter most to participants, and thus have potential to alter subsequent behaviours and bias trial outcomesTwenty participants were opportunistically screened for a health compromising behaviour (unhealthy diet, lack of exercise, smoking or alcohol consumption) and recruited if eligible. Semi structured face to face interviews were conducted, after going through the usual processes involved in trial recruitment, baseline assessment and randomisation. Participants were given information on the contents of an intervention or control condition in a behaviour change trial, which was not actually implemented. Three months later they returned to reflect on these experiences and whether they had any effect on their behaviour during the intervening period. Data from the latter interview were analysed thematically using a modified grounded theory approach.The early processes of trial participation raised awareness of unhealthy behaviours, although most reported having had only fleeting intentions to change their behaviour as a result of taking part in this study, in the absence of interventions. However, careful examination of the accounts revealed evidence of subtle research participation effects, which varied according to the health behaviour, and its perceived social acceptability. Participants' relationships with the research study were viewed as somewhat important in stimulating thinking about whether and how to make lifestyle changes.These participants described no dramatic impacts attributable to taking part in this study. This study demonstrates the likely value of well conducted qualitative studies of subtle research participation effects, which may be particularly important to explore for alcohol. Separating unintended influences in trial participation from the effects of behaviour change interventions being evaluated therein is necessary for valid estimates of intervention effects.

Project description:BackgroundWearables provide opportunities for frequent health data collection and symptom monitoring. The feasibility of using consumer cellular smartwatches to provide information both on symptoms and contemporary sensor data has not yet been investigated.ObjectiveThis study aimed to investigate the feasibility and acceptability of using cellular smartwatches to capture multiple patient-reported outcomes per day alongside continuous physical activity data over a 3-month period in people living with knee osteoarthritis (OA).MethodsFor the KOALAP (Knee OsteoArthritis: Linking Activity and Pain) study, a novel cellular smartwatch app for health data collection was developed. Participants (age ?50 years; self-diagnosed knee OA) received a smartwatch (Huawei Watch 2) with the KOALAP app. When worn, the watch collected sensor data and prompted participants to self-report outcomes multiple times per day. Participants were invited for a baseline and follow-up interview to discuss their motivations and experiences. Engagement with the watch was measured using daily watch wear time and the percentage completion of watch questions. Interview transcripts were analyzed using grounded thematic analysis.ResultsA total of 26 people participated in the study. Good use and engagement were observed over 3 months: most participants wore the watch on 75% (68/90) of days or more, for a median of 11 hours. The number of active participants declined over the study duration, especially in the final week. Among participants who remained active, neither watch time nor question completion percentage declined over time. Participants were mainly motivated to learn about their symptoms and enjoyed the self-tracking aspects of the watch. Barriers to full engagement were battery life limitations, technical problems, and unfulfilled expectations of the watch. Participants reported that they would have liked to report symptoms more than 4 or 5 times per day.ConclusionsThis study shows that capture of patient-reported outcomes multiple times per day with linked sensor data from a smartwatch is feasible over at least a 3-month period.International registered report identifier (irrid)RR2-10.2196/10238.

Project description:BackgroundA rise in the recent trend of self-managing health using consumer health technologies highlights the importance of efficient and successful consumer health technology trials. Trials are particularly essential to support large-scale implementations of consumer health technologies, such as smartphone-supported home tests. However, trials are generally fraught with challenges, such as inadequate enrollment, lack of fidelity to interventions, and high dropout rates. Understanding the reasons underlying individuals' participation in trials can inform the design and execution of future trials of smartphone-supported home tests.ObjectiveThis study aims to identify the enablers of potential participants' trial engagement for clinical trials of smartphone-supported home tests. We use influenza home testing as our instantiation of a consumer health technology subject to trial to investigate the dispositional and situational enablers that influenced trial engagement.MethodsWe conducted semistructured interviews with 31 trial participants using purposive sampling to facilitate demographic diversity. The interviews included a discussion of participants' personal characteristics and external factors that enabled their trial engagement with a smartphone-supported home test for influenza. We performed both deductive and inductive thematic analyses to analyze the interview transcripts and identify enabler themes.ResultsOur thematic analyses revealed a structure of dispositional and situational enablers that enhanced trial engagement. Situationally, clinical affiliation, personal advice, promotional recruitment strategies, financial incentives, and insurance status influenced trial engagement. In addition, digital health literacy, motivation to advance medical research, personal innovativeness, altruism, curiosity, positive attitude, and potential to minimize doctors' visits were identified as the dispositional enablers for trial engagement in our study.ConclusionsWe organized the identified themes for dispositional and situational enablers of trial engagement with a smartphone-supported home test into a research framework that can guide future research as well as the trial design and execution of smartphone-supported home tests. We suggest several trial design and engagement strategies to enhance the financial and scientific viability of these trials that pave the way for advancements in patient care. Furthermore, our study also offers practical strategies to trial organizers to enhance participants' enrollment and engagement in clinical trials of these home tests.

Project description:BACKGROUND:A range of digital technologies are available to lay people to find, share, and generate health-related information. Few studies have directed attention specifically to how women are using these technologies from the diverse array available to them. Even fewer have focused on Australian women's use of digital health. OBJECTIVE:The Australian Women and Digital Health Project aimed to investigate which types of digital technologies women used regularly for health-related purposes and which they found most helpful and useful. Qualitative methods-semistructured interviews and focus groups-were employed to shed light on the situated complexities of the participants' enactments of digital health technologies. The project adopted a feminist new materialism theoretical perspective, focusing on the affordances, relational connections, and affective forces that came together to open up or close off the agential capacities generated with and through these enactments. METHODS:The project comprised two separate studies including a total of 66 women. In study 1, 36 women living in the city of Canberra took part in face-to-face interviews and focus groups, while study 2 involved telephone interviews with 30 women from other areas of Australia. RESULTS:The affordances of search engines to locate health information and websites and social media platforms for providing information and peer support were highly used and valued. Affective forces such as the desire for trust, motivation, empowerment, reassurance, control, care, and connection emerged in the participants' accounts. Agential capacities generated with and through digital health technologies included the capacity to seek and generate information and create a better sense of knowledge and expertise about bodies, illness, and health care, including the women's own bodies and health, that of their families and friends, and that of their often anonymous online social networks. The participants referred time and again to appreciating the feelings of agency and control that using digital health technologies afforded them. When the technologies failed to work as expected, these agential capacities were not realized. Women responded with feelings of frustration, disappointment, and annoyance, leading them to become disenchanted with the possibilities of the digital technologies they had tried. CONCLUSIONS:The findings demonstrate the nuanced and complex ways in which the participants were engaging with and contributing to online sources of information and using these sources together with face-to-face encounters with doctors and other health care professionals and friends and family members. They highlight the lay forms of expertise that the women had developed in finding, assessing, and creating health knowledges. The study also emphasized the key role that many women play in providing advice and health care for family members not only as digitally engaged patients but also as digitally engaged carers.

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Dataset Information

The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences.

Publications

The Use of Web-Based Technologies in Health Research Participation: Qualitative Study of Consumer and Researcher Experiences.

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