Considerations for Health Researchers Using Social Media for Knowledge Translation: Multiple Case Study.

BACKGROUND: Despite extensive literature describing the use of social media in health research, a gap exists around best practices in establishing, implementing, and evaluating an effective social media knowledge translation (KT) and exchange strategies. OBJECTIVE: This study aims to examine successes, challenges, and lessons learned from using social media within health research and to create practical considerations to guide other researchers. METHODS: The Knowledge Translation Platform of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit formed a national working group involving platform staff, academics, and a parent representative with experience using social media for health research. We collected and analyzed 4 case studies that used a variety of social media platforms and evaluation methods. The case studies covered a spectrum of initiatives from participant recruitment and data collection to dissemination, engagement, and evaluation. Methods and findings from each case study as well as barriers and facilitators encountered were summarized. Through iterative discussions, we converged on recommendations and considerations for health researchers planning to use social media for KT. RESULTS: We provide recommendations for elements to consider when developing a social media KT strategy: (1) set a clear goal and identify a theory, framework, or model that aligns with the project goals and objectives; (2) understand the intended audience (use social network mapping to learn what platforms and social influences are available); (3) choose a platform or platforms that meet the needs of the intended audience and align well with the research team's capabilities (can you tap into an existing network, and what mode of communication does it support?); (4) tailor messages to meet user needs and platform requirements (eg, plain language and word restrictions); (5) consider timing, frequency, and duration of messaging as well as the nature of interactions (ie, social filtering and negotiated awareness); (6) ensure adequate resources and personnel are available (eg, content creators, project coordinators, communications experts, and audience stakeholder or patient advocate); (7) develop an evaluation plan a priori driven by goals and types of data available (ie, quantitative and qualitative); and (8) consider ethical approvals needed (driven by evaluation and type of data collection). CONCLUSIONS: In the absence of a comprehensive framework to guide health researchers using social media for KT, we provide several key considerations. Future research will help validate the proposed components and create a body of evidence around best practices for using and evaluating social media as part of a KT strategy.

Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review.

BACKGROUND: Patient and public involvement in health research is important to produce relevant and impactful results. OBJECTIVE: This paper aimed to prioritize and summarize Hirschsprung disease (HD)-related information needs among caregivers of children with HD and pediatric surgeons through partnership with a parent-initiated social media campaign. METHODS: We conducted a Web-based survey with the 2 stakeholder groups to identify information needs. The caregiver survey was conducted through a global Web-based community, and the surgeon survey was distributed to members of the Canadian Association of Paediatric Surgeons (CAPS). We conducted a literature review to identify evidence on the prioritized topics. RESULTS: Our findings showed that 54.9% (89/162) of the individuals completed the caregiver survey and 23.8% (52/218 listed members) of the pediatric surgeons completed the survey distributed through CAPS. Only 20% (18/89) of the caregivers reported being very satisfied or satisfied with the current HD-related resources. A final prioritized list of information needs included bowel management, nutrition and growth, infection, perianal irritation, gastrointestinal pain, surgical diagnostics, and surgical complications. In total, 87 studies were included in the literature review, which included the following: 8 reviews, 2 randomized controlled trials, 74 cohort studies, and 3 practice guidelines. Two priority issues identified by caregivers had only a single study that met the inclusion criteria, whereas 1 topic had none. CONCLUSIONS: With caregiver and surgeon input, we identified 7 information priority areas related to HD. A review of the literature on the priorities found little evidence to support the development of high-quality guidelines. More research is necessary to meet the information needs related to HD as identified by stakeholders.

Success with lifestyle monotherapy in youth with new-onset type 2 diabetes.

BACKGROUND: Evidence is lacking to support the efficacy of lifestyle modification as first-line therapy in the clinical management of type 2 diabetes mellitus (T2DM) in adolescents. METHODS: A retrospective chart review of youth diagnosed with T2DM between 1999 and 2008 was conducted. The authors describe the percentage of youth presenting with glycosylated hemoglobin (HbA1c) of <9% who achieved/maintained target glycemic control (HbA1c ≤7.0%) with lifestyle monotherapy during the year following diagnosis. RESULTS: Among the 275 youth with T2DM, 38% (n=104) presented with an HbA1c <9% and were prescribed lifestyle monotherapy at diagnosis. Of the 80 youth who had sufficient follow-up data over 12 months, 54% successfully maintained target glycemic control solely with lifestyle management. The mean HbA1c score at diagnosis was lower in youth who where successful on lifestlye monotherapy compared with those who were not successful. CONCLUSIONS: A significant proportion of youth newly diagnosed with T2DM presenting with an HbA1c <9% effectively achieved/maintained target glycemic control with lifestyle recommendations alone for 12 months. BACKGROUND: Evidence is lacking to support the efficacy of lifestyle modification as first-line therapy in the clinical management of type 2 diabetes mellitus (T2DM) in adolescents. METHODS: A retrospective chart review of youth diagnosed with T2DM between 1999 and 2008 was conducted. The authors describe the percentage of youth presenting with glycosylated hemoglobin (HbA1c) of <9% who achieved/maintained target glycemic control (HbA1c ≤7.0%) with lifestyle monotherapy during the year following diagnosis. RESULTS: Among the 275 youth with T2DM, 38% (n=104) presented with an HbA1c <9% and were prescribed lifestyle monotherapy at diagnosis. Of the 80 youth who had sufficient follow-up data over 12 months, 54% successfully maintained target glycemic control solely with lifestyle management. The mean HbA1c score at diagnosis was lower in youth who where successful on lifestlye monotherapy compared with those who were not successful. CONCLUSIONS: A significant proportion of youth newly diagnosed with T2DM presenting with an HbA1c <9% effectively achieved/maintained target glycemic control with lifestyle recommendations alone for 12 months.

HISTORIQUE: On ne possède pas assez de preuves pour appuyer l'efficacité des modifications au mode de vie comme thérapie de première ligne afin de prendre en charge le diabète de type 2 (DT2) sur le plan clinique chez les adolescents. MÉTHODOLOGIE: Les chercheurs ont procédé à une analyse rétrospective des dossiers d'adolescents ayant un DT2 qui ont été diagnostiqués entre 1999 et 2008. Ils ont décrit le pourcentage d'adolescents dont l'hémoglobine glycosylée (HbA1c) était inférieure à 9 % et qui ont obtenu ou maintenu le contrôle ciblé de leur glycémie (HbA1c ≤7,0 %) grâce à une monothérapie liée au mode de vie au cours de l'année suivant le diagnostic. RÉSULTATS: Chez les 275 adolescents ayant un DT2, 38 % (n=104) avaient une HbA1c inférieure à 9 % et se sont fait proposer une monothérapie liée au mode de vie au moment du diagnostic. Chez les 80 adolescents qui disposaient de données de suivi suffisantes sur 12 mois, 54 % ont réussi à maintenir le contrôle de leur glycémie ciblée par la seule prise en charge de leur mode de vie. L'indice moyen d'HbA1c des jeunes qui parvenaient aux objectifs ciblés grâce à la monothérapie liée au mode de vie était plus faible que celui des jeunes qui n'y parvenaient pas. CONCLUSIONS: Une forte proportion d'adolescents qui venaient de se faire diagnostiquer un DT2 et dont l'HbA1c était inférieur à 9 % ont réussi à obtenir ou à maintenir le contrôle ciblé de leur glycémie seulement en respectant pendant 12 mois les recommandations liées au mode de vie.