Qualitative Data Sharing: Participant Understanding, Motivation, and Consent

Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants’ willingness to, understanding of, and motivations for data sharing. As part of a larger qualitative study on abortion reporting, we conducted interviews with 64 cisgender women in two states in early 2020 and asked for consent to share de-identified data. At the end of interviews, we asked participants to reflect on their motivations for agreeing or declining to share their data. The vast majority of respondents consented to data sharing and reported that helping others was a primary motivation for agreeing to share their data. However, a substantial number of participants showed a limited understanding of the concept of “data sharing.” Additional research is needed on how to improve participants’ understanding of data sharing and thus ensure fully informed consent.

Biobank Participants’ Attitudes Toward Data Sharing and Privacy: The Role of Trust in Reducing Perceived Risks

Biobank participants are often unaware of possible uses of their genetic and health information, despite explicit descriptions of those uses in consent forms. To explore why this misunderstanding persists, we conducted semi-structured interviews and knowledge tests with 22 participants who had recently enrolled in a research biobank. Results indicated that participants lacked understanding of privacy and data-sharing topics but were mostly unconcerned about associated risks. Participants described their answers on the knowledge test as largely driven by their trust in the healthcare system, not by a close reading of the information presented to them. This finding may help explain the difficulties in increasing participant understanding of privacy-related topics, even when such information is clearly presented in biobank consent forms.

Peningkatan Mutu Produk Jamu Home Industry pada Kelompok Jamu Gendong Desa Karangrejo Kabupaten Magetan di Masa Pandemi Covid-19

The purpose of this community service activity is to improve the quality of jamu gendong products at the home industry of jamu gendong in Karangrejo village, Magetan Regency. The method of service is carried out by training, including procedures for pre-survey activities, surveys, socialization, training, and evaluation. The target of the service activity is the women of the jamu gendong group. The evaluation results showed an increase in participant understanding of 56% about the technique of selecting rhizomes for herbal medicine, an increase in participant understanding of 44% about equipment selection techniques for herbal medicine, an increase in participant understanding of 72% about the hygienic process of making herbal medicine, an increase in participant understanding of 66% about the hygienic packaging process of herbal medicine. The results of monitoring and evaluation showed that 100% of participants were satisfied in participating in the activities, 100% of participants took an active role in participating in the training, 100% of participants were enthusiastic in participating in the activities.

A-133 Emotion Regulation Strategy Use in Veterans with Subjective Cognitive Complaints in a Neuropsychology Clinic

Objective Neuropsychological evaluations reveal individuals with both objective and subjective cognitive complaints. Subjective cognitive complaints (SCC) are often related to potentially modifiable factors, such as mood. One proposed treatment for cognitive complaints is to focus on emotion regulation rather than cognitive rehabilitation. This project examines acceptability and feasibility from the perspective of participants, and determines participant understanding of the relationship between mood and cognition following a brief, one session emotion regulation intervention. Method Two study authors interviewed a subgroup of participants enrolled in a larger longitudinal intervention study about their understanding of the impact of mood on cognitive functioning, the acceptability of the intervention, and ease of using the provided strategies. Study authors then used inductive coding to identify common themes in participants’ responses. Results Preliminary results reveal the following themes: 1. Participant understanding that current cognitive concerns are related to modifiable factors (e.g., sleep, pain, emotional distress) rather than damage to brain structures or a neurodegenerative process. 2. Participants’ need for attentional and memory strategies to consistently use emotional regulation strategies day to day as well as participate fully in adjunctive psychological treatment. 3. Post-intervention awareness of high levels of everyday rumination. Conclusion Individuals with SCCs are amenable to psychological intervention, particularly when delivered with a brain-behavior explanation of how modifiable factors contribute to cognitive difficulties. In order to most successfully apply these strategies, participants may also benefit from targeted cognitive strategies to improve their use of emotion regulation strategies.

Podiatrist-Delivered Health Coaching to Facilitate the Use of a Smart Insole to Support Foot Health Monitoring in People with Diabetes-Related Peripheral Neuropathy

This trial evaluated the feasibility of podiatrist-led health coaching (HC) to facilitate smart-insole adoption and foot monitoring in adults with diabetes-related neuropathy. Adults aged 69.9 ± 5.6 years with diabetes for 13.7 ± 10.3 years participated in this 4-week explanatory sequential mixed-methods intervention. An HC training package was delivered to podiatrists, who used HC to issue a smart insole to support foot monitoring. Insole usage data monitored adoption. Changes in participant understanding of neuropathy, foot care behaviours, and intention to adopt the smart insole were measured. Focus group and in-depth interviews explored quantitative data. Initial HC appointments took a mean of 43.8 ± 8.8 min. HC fidelity was strong for empathy/rapport and knowledge provision but weak for assessing motivational elements. Mean smart-insole wear was 12.53 ± 3.46 h/day with 71.2 ± 13.9% alerts not effectively off-loaded, with no significant effect for time on usage F(3,6) = 1.194 (p = 0.389) or alert responses F(3,6) = 0.272 (p = 0.843). Improvements in post-trial questionnaire mean scores and focus group responses indicate podiatrist-led HC improved participants’ understanding of neuropathy and implementation of footcare practices. Podiatrist-led HC is feasible, supporting smart-insole adoption and foot monitoring as evidenced by wear time, and improvements in self-reported footcare practices. However, podiatrists require additional feedback to better consolidate some unfamiliar health coaching skills. ACTRN12618002053202.

Community-Based Pharmacy Travel Health Service Pilot Impact on Participant Understanding and Satisfaction

Background: Increased rates of international travel have led to a higher demand for healthcare professionals to provide travel health services. Community-based pharmacists are capable of meeting this need. Objective: This study evaluates the impact of pharmacists providing travel health services in a community-based pharmacy on participant understanding and satisfaction of travel education and preparation. Method: A trained pharmacist met with participants to review their medical history, travel itinerary, and provide education. Indicated immunizations were administered and the participant’s primary care provider was contacted if prescription medications were warranted. A questionnaire was administered before and after the travel health consultation assessing participants perceived understanding of travel health information, satisfaction, and perceived monetary value of the service. Data were collected by 5-point Likert-scale responses, with 5 equivalent to strongly agree. Wilcoxon signed-rank test and descriptive statistics were used for evaluation. Participants were included if they had international travel planned within 12 weeks of the consultation. Results: A total of 12 participants were included. Participant understanding significantly increased for all 5 survey items relating to travel health information with a p value < 0.05 for each item. The largest change was for how to find medical help during international travel (medians and IQR were 3(2-3), and 5(5-5) for pre-and post-consultation, respectively, p = 0.003). Participant satisfaction questions received a median response of 5. Participants’ perceived monetary value of the service was a median of $50 (IQR $50-50). Conclusion: Pharmacist-led travel health consultations improved participant understanding of travel health information and was of perceived value.

Randomized comparison of two interventions to enhance understanding during the informed consent process for research

Background/Aims: Many investigators have tested interventions to improve research participant understanding of information shared during the informed consent process, using a variety of methods and with mixed results. A valid criticism of most consent research is that studies are often conducted in simulated research settings rather than ongoing clinical studies. The present study rigorously tested two simple and easily adoptable strategies for presenting key consent information to participants eligible to enroll in six actual clinical trials (i.e. six parent studies). Methods: In collaboration with the study team from each parent study, we developed two consent interventions: a fact sheet and an interview-style video. The content of each of the intervention was based on the information shared in the consent form approved for each parent study. Participants were randomized to the standard consent process, or to one of the two interventions. Once exposed to the assigned consent mode, participants were asked to complete an assessment of understanding. The study was powered to determine whether those exposed to the fact sheet or video performed better on the consent assessment compared to those exposed to the standard consent. We also assessed participant satisfaction with the consent process. Results: A total of 284 participants were randomized to one of the three consent arms. Assessments of understanding were completed with a total of 273 participants from July 2017 to April 2019. Participants exposed to the video had better understanding scores compared to those exposed to the standard consent form process ( p value = 0.020). Participants were more satisfied with the video when compared to the standard consent. Participants who received the fact sheet did not achieve higher overall understanding or satisfaction scores when compared to the standard consent process. Conclusion: This randomized study of two novel consent interventions across six different clinical trials demonstrated a statistically significant difference in participant understanding based on overall scores among those exposed to the video intervention compared to those exposed to the standard consent.

Peningkatan Implementasi Sanitasi Lingkungan melalui Pelatihan bagi Siswa Sekolah Dasar di Bogor

Clean and healthy life behavior (PHBS) in schools is an activity to empower students, teachers, and the community to run a healthy lifestyle and create healthy schools. The activity aims to socialize the importance of environmental sanitation in schools and raise awareness about the importance of environmental health in schools, through socialization and implementation training conducted in September 2020 in Bantarjati District, Bogor City, West Java. The activity was followed by students in grade 4 (four) elementary school totaling 35 students with implementation activities consisting of the preparation, core program and evaluation stages, then analyzed qualitatively through field observations and participant understanding interviews. The implementation of sanitation that has been carried out on students is one of the basic sanitation, which is washing hands and sorting waste by type. Minister of Health Regulation No. 3 of 2014 concerning STBM explains that washing hands with soap is the behavior of washing hands using clean running water and soap. Waste in general is divided into two, namely organic and inorganic waste. Both of these wastes have benefits for us, but they also have an impact on the environment. The results showed that the students' level of understanding at SDN 6 Bantarjati Bogor had a fairly good level. However, periodic socialization needs to be carried out as a process of forming student character and becomes a habit that is carried out so that it can be applied in everyday life through implementation training (practice).

Peningkatan Pengetahuan Masyarakat melalui Pelatihan Pengolahan Jahe Merah menjadi Chew Gummy di Desa Senggigi

Red ginger is a beneficial rhizome used to treat sore throats, dry cough, colic, rheumatism, headache, and flatulence. This community service aims to provide knowledge about the benefits of red ginger for health and how to process red ginger to a worth to sell products. The knowledge about the benefits of red ginger for health presented directly and the processing of chew gummy demonstrated in front of the participants. The community service was carried out at the Senggigi Village Office by involving by involving cadre of Posyandu and PKK asparticipants. The participants are given a pre-test and post-test to determine the increase in participant understanding. The results showed an increase in post-test scores from pre-test values about the benefits of red ginger and its processing. Participants understand the benefits of red ginger for health and can process red ginger into chew gummy preparations.

Qualitative Data Sharing: Participant Understanding, Motivation, and Consent

Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants’ willingness to, understanding of, and motivations for data sharing. As part of a larger qualitative study on abortion reporting, we conducted interviews with 64 cisgender women in two states in early 2020 and asked for consent to share de-identified data. At the end of interviews, we asked participants to reflect on their motivations for agreeing or declining to share their data. The vast majority of respondents consented to data sharing and reported that helping others was a primary motivation for agreeing to share their data. However, a substantial number of participants showed a limited understanding of the concept of “data sharing.” Additional research is needed on how to improve participants’ understanding of data sharing and thus ensure fully informed consent.