RESUMO
INTRODUCTION: Automated mobile phone surveys (MPS) can be used to collect public health data of various types to inform health policy and programs globally. One challenge in administering MPS is identification of an appropriate and effective participant consent process. This study investigated the impact of different survey consent approaches on participant disposition (response characteristics and understanding of the purpose of the survey) within the context of an MPS that measured noncommunicable disease (NCD) risk factors across Colombia and Uganda. METHODS: Participants were randomized to one of five consent approaches, with consent modules varying by the consent disclosure and mode of authorization. The control arm consisted of a standard consent disclosure and a combined opt-in/opt-out mode of authorization. The other four arms consist of a modified consent disclosure and one of four different forms of authorization (i.e., opt-in, opt-out, combined opt-in/opt-out, or implied). Data related to respondent disposition and respondent understanding of the survey purpose were analyzed. RESULTS: Among 1889 completed surveys in Colombia, differences in contact, response, refusal, and cooperation rates by study arms were found. About 68% of respondents correctly identified the survey purpose, with no significant difference by study arm. Participants reporting higher levels of education and urban residency were more likely to identify the purpose correctly. Participants were also more likely to accurately identify the survey purpose after completing several survey modules, compared to immediately following the consent disclosure (78.8% vs 54.2% correct, p<0.001). In Uganda, 1890 completed surveys were collected. Though there were differences in contact, refusal, and cooperation rates by study arm, response rates were similar across arms. About 37% of respondents identified the survey purpose correctly, with no difference by arm. Those with higher levels of education and who completed the survey in English were able to more accurately identify the survey purpose. Again, participants were more likely to accurately identify the purpose of the survey after completing several NCD modules, compared to immediately following the consent module (42.0% vs 32.2% correct, p = 0.013). CONCLUSION: This study contributes to the limited available evidence regarding consent procedures for automated MPS. Future studies should develop and trial additional interventions to enhance consent for automated public health surveys, and measure other dimensions of participant engagement and understanding.
Assuntos
Telefone Celular , Doenças não Transmissíveis , Humanos , Uganda , Colômbia , Inquéritos e Questionários , Fatores de Risco , Consentimento Livre e EsclarecidoRESUMO
Public health surveys deployed through automated mobile phone calls raise a set of ethical challenges, including succinctly communicating information necessary to obtain respondent informed consent. This study aimed to capture the perspectives of key stakeholders, both experts and community members, on consent processes and preferences for participation in automated mobile phone surveys (MPS) of non-communicable disease risk factors in Colombia. We conducted semi-structured interviews with ethics and digital health experts and focus group discussions with community representatives. There was meaningful disagreement within both groups regarding the necessity of consent, when the purpose of a survey is to contribute to the formulation of public policies. Respondents who favored consent emphasized that consent communications ought to promote understanding and voluntariness, and implicitly suggested that information disclosure conform to a reasonable person standard. Given the automated and unsolicited nature of the phone calls and concerns regarding fraud, trust building was emphasized as important, especially for national MPS deployment. Community sensitization campaigns that provide relevant contextual information (such as the name of the administering institution) were thought to support trust-building. Additional ways to achieve the goals of consent while building trust in automated MPS for disease surveillance should be evaluated in order to inform ethical and effective practice.
Assuntos
Telefone Celular , Colômbia , Inquéritos Epidemiológicos , Humanos , Consentimento Livre e Esclarecido , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Data collection on noncommunicable disease (NCD) behavioral risk factors has traditionally been carried out through face-to-face surveys. However, its high costs and logistical difficulties can lead to lack of timely statistics for planning, particularly in low and middle-income countries. Mobile phone surveys (MPS) have the potential to fill these gaps. OBJECTIVE: This study explores perceptions, feasibility and strategies to increase the acceptability and response rate of health surveys administered through MPS using interactive voice response in Colombia. METHOD: A sequential multimodal exploratory design was used. We conducted key informant interviews (KII) with stakeholders from government and academia; focus group discussions (FGDs) and user-group tests (UGTs) with young adults and elderly people living in rural and urban settings (men and women). The KII and FGDs explored perceptions of using mobile phones for NCD surveys. In the UGTs, participants were administered an IVR survey, and they provided feedback on its usability and potential improvement. RESULTS: Between February and November 2017, we conducted 7 KII, 6 FGDs (n = 54) and 4 UGTs (n = 34). Most participants consider MPS is a novel way to explore risk factors in NCDs. They also recognize challenges for their implementation including security issues, technological literacy and telecommunications coverage, especially in rural areas. It was recommended to promote the survey using mass media before its deployment and stressing its objectives, responsible institution and data privacy safeguards. The preferences in the survey administration relate to factors such as skills in the use of mobile phones, age, availability of time and educational level. The participants recommend questionnaires shorter than 10 minutes. CONCLUSIONS: The possibility of obtaining data through MPS at a population level represents an opportunity to improve the availability of risk-factor data. Steps towards increasing the acceptability and overcoming technological and methodological challenges need to be taken.