Perspective of Patients and Stakeholders as Members of a Research Team.

Systemic sclerosis (SSc) is a rare orphan disease, characterized by skin thickening, vascular insufficiency, and fibrosis of internal organs. SSc affects about 100,000 people in the United States. This study explored perceived benefits and challenges of patient partners and stakeholders, who were team members on a project to revise and test a self-management program (Taking Charge of Systemic Sclerosis). Five patient partners, 1 stakeholder from the Scleroderma Foundation and 1 stakeholder from a state chapter of the Scleroderma Foundation were interviewed. Conversations were audio recorded and transcribed verbatim and analyzed. Four themes emerged from the analysis with corresponding subthemes: contributions to study, benefits of involvement, challenges, and project leadership. The themes and subthemes were generally similar to those expressed in other studies. However, additional benefits from engagement were identified: acceptance, increased knowledge of SSc, and helping others. Participants reported feeling supported and valued as members of the team and that their opinions mattered which is in contrast with findings from other studies.

Randomized Controlled Trial to Evaluate an Internet-Based Self-Management Program in Systemic Sclerosis.

OBJECTIVE: In a pilot study, our group showed that an internet-based self-management program improves self-efficacy in systemic sclerosis (SSc). The objective of the current study was to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in patients with SSc. METHODS: We conducted a 16-week randomized, controlled trial. RESULTS: Of the 267 participants who completed baseline questionnaires and were randomized to the intervention (internet: www.selfmanagescleroderma.com) or control (book) group, 123 participants (93%) in the internet group and 124 participants (94%) in the control group completed the 16-week randomized controlled trial (RCT). The mean ± SD age of all participants was 53.7 ± 11.7 years, 91% were women, and 79.4% had some college or a higher degree. The mean ± SD disease duration after diagnosis of SSc was 8.97 ± 8.50 years. There were no statistical differences between the 2 groups for the primary outcome measure (Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Symptoms: mean change of 0.35 in the internet group versus 0.94 in the control group; P = 0.47) and secondary outcome measures, except the EuroQol 5-domain instrument visual analog scale score (P = 0.05). Internet group participants agreed that the self-management modules were of importance to them, the information was presented clearly, and the website was easy to use and at an appropriate reading level. CONCLUSION: Our RCT showed that the internet-based self-management website was not statistically superior to an educational patient-focused book in improving self-efficacy and other measures. The participants were enthusiastic about the content and presentation of the self-management website.

Changing the Culture of Academic Medicine: Critical Mass or Critical Actors?

PURPOSE: By 2006, women constituted 34% of academic medical faculty, reaching a critical mass. Theoretically, with critical mass, culture and policy supportive of gender equity should be evident. We explore whether having a critical mass of women transforms institutional culture and organizational change. METHODS: Career development program participants were interviewed to elucidate their experiences in academic health centers (AHCs). Focus group discussions were held with institutional leaders to explore their perceptions about contemporary challenges related to gender and leadership. Content analysis of both data sources revealed points of convergence. Findings were interpreted using the theory of critical mass. RESULTS: Two nested domains emerged: the individual domain included the rewards and personal satisfaction of meaningful work, personal agency, tensions between cultural expectations of family and academic roles, and women's efforts to work for gender equity. The institutional domain depicted the sociocultural environment of AHCs that shaped women's experience, both personally and professionally, lack of institutional strategies to engage women in organizational initiatives, and the influence of one leader on women's ascent to leadership. CONCLUSIONS: The predominant evidence from this research demonstrates that the institutional barriers and sociocultural environment continue to be formidable obstacles confronting women, stalling the transformational effects expected from achieving a critical mass of women faculty. We conclude that the promise of critical mass as a turning point for women should be abandoned in favor of "critical actor" leaders, both women and men, who individually and collectively have the commitment and power to create gender-equitable cultures in AHCs.

Narratives of Participants in National Career Development Programs for Women in Academic Medicine: Identifying the Opportunities for Strategic Investment.

BACKGROUND: Academic medicine has initiated changes in policy, practice, and programs over the past several decades to address persistent gender disparity and other issues pertinent to its sociocultural context. Three career development programs were implemented to prepare women faculty to succeed in academic medicine: two sponsored by the Association of American Medical Colleges, which began a professional development program for early career women faculty in 1988. By 1995, it had evolved into two programs one for early career women and another for mid-career women. By 2012, more than 4000 women faculty from medical schools across the U.S and Canada had participated in these intensive 3-day programs. The third national program, the Hedwig van Ameringen Executive Leadership in Academic Medicine(®) (ELAM) program for women, was developed in 1995 at the Drexel University College of Medicine. METHODS: Narratives from telephone interviews representing reflections on 78 career development seminars between 1988 and 2010 describe the dynamic relationships between individual, institutional, and sociocultural influences on participants' career advancement. RESULTS: The narratives illuminate the pathway from participating in a career development program to self-defined success in academic medicine in revealing a host of influences that promoted and/or hindered program attendance and participants' ability to benefit after the program in both individual and institutional systems. The context for understanding the importance of these career development programs to women's advancement is nestled in the sociocultural environment, which includes both the gender-related influences and the current status of institutional practices that support women faculty. CONCLUSIONS: The findings contribute to the growing evidence that career development programs, concurrent with strategic, intentional support of institutional leaders, are necessary to achieve gender equity and diversity inclusion.

Perceptions of skill development of participants in three national career development programs for women faculty in academic medicine.

PURPOSE: The Association of American Medical Colleges (AAMC) and Drexel University College of Medicine have designed and implemented national career development programs (CDPs) to help women faculty acquire and strengthen skills needed for success in academic medicine. The authors hypothesized that skills women acquired in CDPs would vary by career stage and program attended. METHOD: In 2011, the authors surveyed a national cohort of 2,779 women listed in the AAMC Faculty Roster who also attended one of three CDPs (Early- and Mid-Career Women in Medicine Seminars, and/or Executive Leadership in Academic Medicine) between 1988 and 2010 to examine their characteristics and CDP experiences. Participants indicated from a list of 16 skills whether each skill was newly acquired, improved, or not improved as a result of their program participation. RESULTS: Of 2,537 eligible CDP women, 942 clicked on the link in an invitation e-mail, and 879 (93%) completed the survey. Respondents were representative of women faculty in academic medicine. Participants rated the CDPs highly. Almost all reported gaining and/or improving skills from the CDP. Four skills predominated across all three programs: interpersonal skills, leadership, negotiation, and networking. The skills that attendees endorsed differed by respondents' career stages, more so than by program attended. CONCLUSIONS: Women participants perceived varying skills gained or improved from their attendance at the CDPs. Determining ways in which CDPs can support women's advancement in academic medicine requires a deeper understanding of what participants seek from CDPs and how they use program content to advance their careers.