scholarly journals Assessing research participant preferences for receiving study results

2019 ◽  
Vol 4 (3) ◽  
pp. 243-249
Author(s):  
Sarah Cook ◽  
Stephanie Mayers ◽  
Kathryn Goggins ◽  
David Schlundt ◽  
Kemberlee Bonnet ◽  
...  
Keyword(s):  
Focus Groups ◽  
Information Needs ◽  
College Education ◽  
Research Participant ◽  
Stakeholder Group ◽  
Survey Study ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
To Receive

AbstractIntroduction:Dissemination of results to research participants is largely missing from the practices of most researchers. Few resources exist that describe best practices for disseminating information to this important stakeholder group.Methods:Four focus groups were conducted with a diverse group of individuals. All participants were part of a Patient-Centered Outcomes Research Institute-funded survey study. Focus groups aimed to identify participants’ preferences about receiving research results and their reactions to three different dissemination platforms.Results:Four focus groups with 37 participants were conducted, including: (1) adults with one comorbidity, at least a college education, and high socioeconomic status (SES); (2) adults with one comorbidity, less than a college education, and lower SES; (3) adults with low health literacy and/or numeracy; and (4) Black or African American adults. Participants discussed their preferences for research results delivery and how each of the platforms met those preferences. This included information needs as they relate to content and scope, including a desire to receive both individual and aggregate results, and study summaries. Email, paper, and website were all popular avenues of presentation. Some desired a written summary, and others preferred videos or visual graphics. Importantly, participants emphasized the desire for having a choice in the timing, frequency, and types of results.Conclusion:Research participants prefer to receive research results, including study impact and key findings, disseminated to them in an engaging format that allows choice of when and how the information is presented. The results encourage new standards whereby research participants are considered a critical stakeholder group.

scholarly journals Improving dissemination of study results: perspectives of individuals with cystic fibrosis

2019 ◽  
Vol 15 (3-4) ◽  
pp. 1-14
Author(s):  
Emily Christofides ◽  
Karla Stroud ◽  
Diana Elizabeth Tullis ◽  
Kieran C. O’Doherty
Keyword(s):  
Cystic Fibrosis ◽  
Research Ethics ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
Research Findings ◽  
The Impact ◽  
To Receive ◽  
Accessible Format

The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and what research participants’ views are in this regard. We interviewed 21 adults with cystic fibrosis who had previously participated in research and 2 research coordinators at a cystic fibrosis clinic. We aimed to better understand research participants’ views on receiving research results, types of findings they are interested in, how they would like to receive this information, and the impact this might have on future participation. Participants reported that they do not generally recall receiving study findings, though many reported that they would like to receive them. While some participants were not interested in receiving results, all participants felt that these results should be provided when desired by participants and believed that receiving study findings would support future participation. Participants felt that an accessible format, such as a lay summary, would be most helpful. This study supports calls to make study findings available to participants, though the format in which they are provided requires consideration. Participants rarely recalled receiving findings despite the clinic in which this study was conducted returning them regularly. Therefore, questions pertaining to the provision of study findings must focus less on whether to share the findings and more on how to share them with participants most effectively. The logistics of providing study findings may be challenging in some cases, but participant support for the practice highlights its importance.

scholarly journals Research Participants’ Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort

10.2196/18556 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e18556
Author(s):  
Erika Rees-Punia ◽  
Alpa V Patel ◽  
Asher Beckwitt ◽  
Corinne R Leach ◽  
Susan M Gapstur ◽  
...  
Keyword(s):  
Data Collection ◽  
Focus Groups ◽  
Race And Ethnicity ◽  
Research Participant ◽  
Prevention Study ◽  
Research Participants ◽  
Study Staff ◽  
Report Data ◽  
Case Design ◽  
Comparison Technique

Background Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. Objective The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. Methods CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. Results Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. Conclusions In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.

The Return of Results of Deceased Research Participants

2011 ◽  
Vol 39 (4) ◽  
pp. 621-630 ◽  
Author(s):  
Anne Marie Tassé
Keyword(s):  
Population Studies ◽  
Genetic Research ◽  
Family Members ◽  
Research Participant ◽  
Return Of Results ◽  
Research Results ◽  
Research Participants ◽  
Related Family ◽  
Ethical And Legal Issues

Until the mid-20th century, biomedical research centered on the study of specific diseases, concerned with short periods of time and small groups of living research participants. However, the growth of longitudinal population studies and long-term biobanking now forces the research community to examine the possibility of the death of their research participants.The death of a research participant raises numerous ethical and legal issues, including the return of deceased individuals’ research results to related family members. As with the return of individual research results for living research participants, the question of the obligation to return a deceased person’s research results to family members has yet to be settled. This question is particularly acute in the context of genetic research since the research results from one individual may have health implications for all biological relatives.

scholarly journals Recommendations for the Return of Research Results to Study Participants and Guardians: A Report From the Children's Oncology Group

2012 ◽  
Vol 30 (36) ◽  
pp. 4573-4579 ◽  
Author(s):  
Conrad V. Fernandez ◽  
Kathleen Ruccione ◽  
Robert J. Wells ◽  
Jay B. Long ◽  
Wendy Pelletier ◽  
...  
Keyword(s):  
Task Force ◽  
Return Of Results ◽  
Personal Contact ◽  
Oncology Group ◽  
Cooperative Research ◽  
Group Setting ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
Study Participants

Purpose The Children's Oncology Group (COG) strongly supports the widely recognized principle that research participants should be offered a summary of study results. The mechanism by which to do so in a cooperative research group setting has not been previously described. Methods On the basis of a review of the available empirical and theoretic literature and on iterative, multidisciplinary discussion, a COG Return of Results Task Force (RRTF) offered detailed recommendations for the return of results to research study participants. Results The RRTF established guidelines for the notification of research participants and/or their parents/guardians about the availability of research results, a mechanism for and timing of sharing results via registration on the COG public Web site, the scope of the research to be shared, the target audience, and a process for creating and vetting lay summaries of study results. The RRTF recognized the challenges in adequately conveying complex scientific results to audiences with varying levels of health literacy and recommended that particularly sensitive or complex results be returned using direct personal contact. The RRTF also recommended evaluation of the cost, effectiveness, and impact of sharing results. Conclusion These recommendations provide a framework for the offering and returning of results to participants. They can be used by individual investigators, multi-investigator research collaboratives, and large cooperative groups.

Disclosure of the right of research participants to receive research results

Cancer ◽  
2003 ◽  
Vol 97 (11) ◽  
pp. 2904-2909 ◽  
Author(s):  
Conrad V. Fernandez ◽  
Eric Kodish ◽  
Shaureen Taweel ◽  
Susan Shurin ◽  
Charles Weijer
Keyword(s):  
Research Results ◽  
Research Participants ◽  
The Right ◽  
To Receive

scholarly journals Delivery of the research participant perception survey through the patient portal

2018 ◽  
Vol 2 (3) ◽  
pp. 163-168 ◽  
Author(s):  
Issis J. Kelly-Pumarol ◽  
Perrin Q. Henderson ◽  
Julia T. Rushing ◽  
Joseph E. Andrews ◽  
Rhonda G. Kost ◽  
...  
Keyword(s):  
Response Rate ◽  
Research Participant ◽  
Response Rates ◽  
Patient Portal ◽  
Research Experiences ◽  
Research Participants ◽  
Participant Perception ◽  
To Receive ◽  
Perception Survey ◽  
Research Studies

IntroductionThe patient portal may be an effective method for administering surveys regarding participant research experiences but has not been systematically studied.MethodsWe evaluated 4 methods of delivering a research participant perception survey: mailing, phone, email, and patient portal. Participants of research studies were identified (n=4013) and 800 were randomly selected to receive a survey, 200 for each method. Outcomes included response rate, survey completeness, and cost.ResultsAmong those aged <65 years, response rates did not differ between mail, phone, and patient portal (22%, 29%, 30%,p>0.07). Among these methods, the patient portal was the lowest-cost option. Response rates were significantly lower using email (10%,p<0.01), the lowest-cost option. In contrast, among those aged 65+ years, mail was superior to the electronic methods (p<0.02).ConclusionsThe patient portal was among the most effective ways to reach research participants, and was less expensive than surveys administered by mail or telephone.

scholarly journals Research Participants’ Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort (Preprint)

2020 ◽  
Author(s):  
Erika Rees-Punia ◽  
Alpa V Patel ◽  
Asher Beckwitt ◽  
Corinne R Leach ◽  
Susan M Gapstur ◽  
...  
Keyword(s):  
Data Collection ◽  
Focus Groups ◽  
Race And Ethnicity ◽  
Research Participant ◽  
Prevention Study ◽  
Research Participants ◽  
Study Staff ◽  
Report Data ◽  
Case Design ◽  
Comparison Technique

BACKGROUND Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. OBJECTIVE The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. METHODS CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. RESULTS Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. CONCLUSIONS In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.

Designing an Educational Strategy for Increasing Organ Donor Registration among Older Adults

2008 ◽  
Vol 18 (4) ◽  
pp. 290-296 ◽  
Author(s):  
Kimberly Downing ◽  
Linda L. Jones
Keyword(s):  
Older Adults ◽  
Focus Groups ◽  
Organ Donation ◽  
Older Adult ◽  
Information Needs ◽  
Adult Population ◽  
Organ Donor ◽  
Educational Strategy ◽  
Younger Adults ◽  
Research Results

Context Older adults (50–70 years of age) have lower organ donor registration rates than younger adults. Despite recent increases in organ donation registration of adults 18 to 49 years of age, the increase in older adult registrations is less. Objective To use research results from surveys and focus groups to inform an educational strategy and design for the older adult population. Design Pooled survey data from 3 statewide random-digit dial telephone interview surveys of 6230 adults, including 2631 respondents age 50 or older, were used to identify barriers to organ donor registration and information needs of older adults compared with younger adults. Two focus groups with older adults were used to further identify barriers and to pilot test messages for an educational strategy for older adults. Setting and Participants Surveys were conducted with adults in Ohio. Focus groups were conducted in 2 major cities in Ohio with older adults, 50 to 70 years of age. Results Survey results indicate that older adults and younger adults differ on several factors regarding their beliefs, attitudes, and behavior concerning organ donation. Although older adults express positive attitudes toward donation, they often “opt out” from registering to be organ donors for age and health reasons. Focus groups show similar barriers to organ donor registration and indicate that brochures are a preferred way to educate older adults about organ donation. Conclusion Using research results to identify barriers and information needs of specific demographic groups is very important in designing a targeted educational strategy. An educational campaign addressing the concerns and information needs of this age group could increase organ donor registration.

Information-seeking to Support Personal and Community Wellbeing: Report of a study of New Zealand Men Using Focus Groups

2016 ◽  
Author(s):  
Peta Wellstead
Keyword(s):  
New Zealand ◽  
Focus Groups ◽  
Support Services ◽  
Information Seeking ◽  
Service Providers ◽  
Structural Constraints ◽  
Health And Wellbeing ◽  
Study Results ◽  
Groupes De Discussion

This paper reports part of an ongoing study exploring the information behaviour of New Zealand men during periods of diminished health and wellbeing. Focus groups were used for this iteration of the study. Results indicate that New Zealand men face both personal and structural constraints to their information-seeking during periods when their health and wellbeing may be compromised. This study highlights that service providers need to develop more effective information delivery mechanisms and support services for men. These services need to be appealing to men and reflect men’s information seeking preferences. The role of LIS professionals in supporting this endeavour is discussed. Cet article présente une étude en cours explorant le comportement informationnel d’ hommes néo-zélandais durant des périodes où leur état de santé et de bien-être est amoindri. Des groupes de discussion ont été utilisés pour cette itération de l'étude. Les résultats indiquent que les hommes en Nouvelle-Zélande font face à des contraintes à la fois  personnelles et structurelles dans leur recherche d'information pendant les périodes où leur santé et leur bien-être peuvent être affaiblis. Cette étude met en évidence le besoin pour les fournisseurs de services de développer des mécanismes de diffusion de l'information plus efficaces et des services de soutien pour les hommes. Ces services doivent être attrayants et refléter les préférences des hommes dans leurs recherches d’information. Le rôle des professionnels de l'information dans le soutien à cette entreprise est discuté.

A survey of Instagram users with asthma to evaluate the acceptability of a planned clinical trial intervention (Preprint)

2020 ◽  
Author(s):  
Kerry Spitzer ◽  
Brent Heineman ◽  
Marcella Jewell ◽  
Michael Moran ◽  
Peter Lindenauer
Keyword(s):  
United States ◽  
Social Media ◽  
Health Care Providers ◽  
College Education ◽  
The United States ◽  
Survey Study ◽  
Care Providers ◽  
Healthy Behaviors ◽  
Social Media Platforms ◽  
Hispanic White

BACKGROUND Asthma is a chronic lung disease that affects nearly 25 million individuals in the United States. There is a need for more research into the potential for health care providers to leverage existing social media platforms to improve healthy behaviors and support individuals living with chronic health conditions. OBJECTIVE In this study, we assess the willingness of Instagram users with poorly controlled asthma to participate in a pilot study that uses Instagram as a means of providing social and informational support. In addition, we explore the potential for adapting photovoice and digital storytelling to social media. METHODS A survey study of Instagram users living with asthma in the United States, between the ages of 18 to 40. RESULTS Over 3 weeks of recruitment, 457 individuals completed the pre-survey screener; 347 were excluded. Of the 110 people who were eligible and agreed to participate in the study, 82 completed the study survey. Respondents mean age was 21(SD = 5.3). Respondents were 56% female (n=46), 65% (n=53) non-Hispanic white, and 72% (n=59) had at least some college education. The majority of respondents (n = 66, 81%) indicated that they would be willing to participate in the study. CONCLUSIONS Among young-adult Instagram users with asthma there is substantial interest in participating in a study that uses Instagram to connect participants with peers and a health coach in order to share information about self-management of asthma and build social connection.

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