Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research.

Importance: Using social media to recruit participants is a common and cost-effective practice. Willingness to participate (WTP) in biomedical research is a function of trust in the scientific team, which is closely tied to the source of funding and institutional connections. Objective: To determine whether WTP and willingness to share social media data are associated with the type of research team and online recruitment platform. Design, Setting, and Participants: This mixed-methods longitudinal survey and qualitative study was conducted over 2 points (T1 and T2) using Amazon's Mechanical Turk (MTurk) platform. Participants were US adults aged 18 years or older who use at least 1 social media platform. Recruitment was stratified to match race/ethnicity proportions of the 2010 US Census. The volunteer sample consisted of 914 participants at T1, and 655 participants completed the follow-up survey 5 months later (T2). Main Outcomes and Measures: Outcomes were (1) past experience with online research and sharing social media data for research; (2) WTP in research advertised online; (3) WTP in a study sponsored by a pharmaceutical company, a university, or a federal agency; and (4) willingness to share social media data. Opinions were solicited regarding the European Union's General Data Protection Regulation statute, which came into effect between T1 and T2. Results: Of 914 participants completing the first survey (T1), 604 (66.1%) were aged 18 to 39 years and 494 (54.0%) were female. Of these, 655 participants (71.7%) responded at T2. While 680 participants (74.4%) indicated WTP in biomedical research, only 454 (49.3%) were willing to share their social media data. Participants were significantly less likely to participate in federally sponsored (odds ratio [OR], 0.58; 95% CI, 0.51-0.64; P < .001) or pharmaceutical company (OR, 0.59; 95% CI, 0.53-0.66; P < .001) research than university-led studies. They were also less likely to share their social medial data for federal (OR, 0.65; 95% CI, 0.58-0.72; P < .001) or pharmaceutical company (OR, 0.50; 95% CI, 0.44-0.56; P < .001) research compared with academic studies. Willingness to participate in pharmaceutical company-led research decreased 11.89% from T1 to T2 (OR for T2, 0.62; 95% CI, 0.54-0.77; P < .001). Reasons for WTP were interest in furthering science, financial incentives, trust in the organization, and data security. While 63.0% of respondents reported seeing new privacy policy emails related to the General Data Protection Regulation law, only 27.1% indicated this positively influenced their WTP. Thematic analysis of responses indicated that WTP may improve with stronger data security measures. Conclusions and Relevance: This study suggests that researchers may see reduced online research participation and data sharing, particularly for research conducted outside academia.

Preference for in-person psychotherapy versus digital psychotherapy options for depression: survey of adults in the U.S.

Several barriers complicate access to psychotherapy for depression, including time commitment, location of services, and stigma. Digital treatment has the potential to address these barriers, yet long term use of digital psychotherapy is poor. This paper presents data from a mixed-methods, online survey to document concerns patients with depression face when given the choice of in-person psychotherapy and digital psychotherapy. Participants were 164 adults living in the United States who had previously used or considered psychotherapy for depression. Rural-dwelling and racial/ethnic minority (Native American, African American, and Spanish-speaking) respondents were purposively sampled. Participants were asked their preferences for and opinions about four treatment modalities: self-guided digital, peer-supported digital, expert-guided digital, or in-person psychotherapy. Less than half (44.5%) of participants preferred in-person psychotherapy, 25.6% preferred self-guided digital treatment, 19.7% preferred expert-guided digital treatment, and 8.5% peer-supported digital treatment. Principal themes extracted from qualitative analysis centered on the efficacy of digital treatment, access to digital treatment, concerns about peer-supported care, confidentiality and privacy concerns, preference for in-person treatment, skepticism about self-guided therapy, and the impact of social anxiety on the use of video-chat based care. Future development of digital psychotherapy will need to address concerns regarding efficacy, privacy, data security, and methods to enhance motivation to use these treatments.

Cancer Survivorship Care in Advanced Primary Care Practices: A Qualitative Study of Challenges and Opportunities.

Importance: Despite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors. Objective: To explain why primary care has not begun to integrate comprehensive cancer survivorship services. Design, Setting, and Participants: Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes. Main Outcomes and Measures: Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care. Results: The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care. Conclusions and Relevance: To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.

Harm reduction and 12 steps: complementary, oppositional, or something in-between?

BACKGROUND: Initially born of the desire to prevent the transmission of HIV among injection drug users, harm reduction presents a relatively new option for assisting individuals who struggle with drug and alcohol use. Twelve-step programs such as Alcoholics Anonymous (AA) are widely recognized as being a representative example of abstinence-based treatment and are often seen as oppositional to harm reduction. METHODS: The purpose of this study is to examine the ways in which harm reduction workers interpret the relationship between harm reduction and 12-step approaches to treatment. The study draws upon qualitative interviews with 18 staff members from two harm reduction-based substance use treatment programs. (1) RESULTS: Two central themes emerge from the qualitative data: (1) harm reduction and 12-step approaches can be complementary; and (2) 12-step approaches in high-threshold treatment settings may differ significantly from their original philosophy and intent. A third, much less prominent theme reflects some respondents' skepticism about the capacity of the two approaches to work together given the resistance to harm reduction by some in the 12-step community. CONCLUSION: Complementary conceptualizations of harm reduction and 12-step approaches have the potential to broaden the range of options available to people experiencing substance use problems.

"Everyone deserves services no matter what": defining success in harm-reduction-based substance user treatment.

This article reports qualitative interview data from a study of participant-generated outcomes of two harm reduction programs in the United States. We address the question:"What does success in harm-reduction-based substance user treatment look like?" Providers in this study understood harm reduction to adhere to notions of "any positive change," client centeredness, and low-threshold services. Participants reported changes in demarginalization, engagement in the program, quality of life, social functioning, changes in substance use, and changes in future goals and plans. The nature of these changes is difficult to articulate within traditional notions of success (i.e., abstinence, program completion, etc.). We conclude that participants in harm reduction programs experience tangible positive changes but that legitimation of these changes calls for a reconceptualization of "outcomes" and "success" in the current context of substance user treatment and research.

Harm reduction among at-risk elderly drinkers: a site-specific analysis from the multi-site Primary Care Research in Substance Abuse and Mental Health for Elderly (PRISM-E) study.

OBJECTIVES: To assess the efficacy of a harm-reduction based intervention to enhance access to treatment and clinical outcomes among elderly at-risk drinkers. DESIGN: A site-specific secondary data analysis of Primary Care Research in Substance Abuse and Mental Health for Elders study (PRISM-E). PARTICIPANTS: Thirty-four at-risk drinkers age 65 or older who were randomized into one of two treatment conditions: an integrated care condition which incorporated a harm-reduction based approach to treatment and an enhanced referral condition. MEASURES: Access to subsequent services and clinical outcomes were examined 6 months post index-interview date. Clinical outcomes included changes in the number of drinks in the week prior to assessment, changes in the number of binges in the past 3 months prior to assessment, and changes in scores on the Short Michigan Alcoholism Screening Test-Geriatric Version (SMAST-G). RESULTS: At-risk drinkers in the integrated care condition were more likely to access treatment than at-risk drinkers assigned to the enhanced referral condition (93% vs 35%; chi(2) = 11.38, df = 1, p = 0.001). Among those who received treatment, there were no differences in the total amount of treatment visits or in the number of brief alcohol interventions received among at-risk drinkers in the two conditions. However, those in integrated care condition received services sooner than those in the referral condition. Those in the integrated care condition showed a significant decrease in the number of drinks in the past week and in the number of binge drinking episodes in the past 3 months while there were no significant changes in these outcomes among the at-risk drinkers in the enhanced referral condition. CONCLUSIONS: At-risk drinkers in the integrated care condition were more likely to access treatment and decrease harmful drinking behaviors than those in the enhanced referral condition. Implications for future research and treatment are discussed.