Social Media in the Diabetes Community: a Novel Way to Assess Psychosocial Needs in People with Diabetes and Their Caregivers.

PURPOSE OF REVIEW: Diabetes is a chronic disease that, regardless of type, requires intensive, ongoing self-management. As a result, people with diabetes (PWD) often have complex environmental, social, behavioral, and informational needs, many of which are unmet in healthcare settings and systems. To help meet these needs, many PWD interact with diabetes online communities (DOCs), including platforms such as Facebook, Twitter, and blogs, to share real-life support, problems, and concerns with other PWD, offering a rich source of data on patient-reported outcomes. This article reviews recent psychosocial needs and outcomes identified by studies of DOCs and/or their users. RECENT FINDINGS: Participation in DOCs appears driven by a need for psychosocial support, unmet by providers and the healthcare system, as well as a sense of duty to provide it to others. The most common activities observed in DOCs are giving and receiving various types of support: psychosocial, technical, informational, and self-management. General and specific challenges (e.g., continuous glucose monitoring) as well as frustrations and worries associated with those challenges are commonly expressed, leading to reciprocal sharing, support, and encouragement, in a judgment-free manner, from other PWD. This leads users to feel more understood, empowered, validated, less alone, and more supported. Negative findings were reported very rarely and focused more on how other participants used social media rather than on the exchange of misplaced or dangerous information or advice. Diabetes online communities have grown from unmet needs for problem-solving and psychosocial support for living with a complex condition and from the availability of a new communications medium (i.e., social media). This has enabled communities of peers to both seek and receive support for living with diabetes, providing an important supplement to what is provided in healthcare settings and offering valuable information about what is most important to PWD and their families, with the potential to improve psychosocial care.

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders.

Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations.

Patient-centered medical home: how it affects psychosocial outcomes for diabetes.

Fragmentation of the current U.S. health care system and the increased prevalence of chronic diseases in the U.S. have led to the recognition that new models of care are needed. Chronic disease management, including diabetes, is often accompanied by a myriad of associated psychosocial issues that need to be addressed as part of a comprehensive treatment plan. Diabetes care should be aligned with comprehensive whole-person health care. The patient-centered medical home (PCMH) has emerged as a model for enhanced primary care that focuses on comprehensive integrated care. PCMH demonstration projects have shown improvements in quality of care, patient experience, care coordination, access to care, and quality measures for diabetes. Key PCMH transformative features associated with psychosocial issues related to diabetes reviewed in this article include integration of mental and behavioral health, care management/coordination, payment reform, advanced access, and putting the patient at the center of health care. This article also reviews the evidence supporting comprehensive and integrated care for addressing psychosocial issues associated with diabetes in the medical home.

A Qualitative Analysis of Real-Time Continuous Glucose Monitoring Data Sharing with Care Partners: To Share or Not to Share?

BACKGROUND: Little research exists regarding how real-time continuous glucose monitoring (RT-CGM) data sharing plays a role in the relationship between patients and their care partners. OBJECTIVE: To (1) identify the benefits and challenges related to RT-CGM data sharing from the patient and care partner perspective and (2) to explore the number and type of individuals who share and follow RT-CGM data. METHODS: This qualitative content analysis was conducted by examining publicly available blogs focused on RT-CGM and data sharing. A thematic analysis of blogs and associated comments was conducted. RESULTS: A systematic appraisal of personal blogs examined 39 blogs with 206 corresponding comments. The results of the study provided insight about the benefits and challenges related to individuals with diabetes sharing their RT-CGM data with a care partner(s). The analysis resulted in three themes: (1) RT-CGM data sharing enhances feelings of safety, (2) the need to communicate boundaries to avoid judgment, and (3) choice about sharing and following RT-CGM data. RT-CGM data sharing occurred within dyads (n = 46), triads (n = 15), and tetrads (n = 2). CONCLUSIONS: Adults and children with type 1 diabetes and their care partners are empowered by the ability to share and follow RT-CGM data. Our findings suggest that RT-CGM data sharing between an individual with diabetes and their care partner can complicate relationships. Healthcare providers need to engage patients and care partners in discussions about best practices related to RT-CGM sharing and following to avoid frustrations within the relationship.

The emerging diabetes online community.

BACKGROUND: Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes. METHODS: Research and online content related to diabetes online activity is reviewed, and DOC writing excerpts are used to illustrate key themes. Guidelines for meaningful participation in DOC activities for people with diabetes, families, health care providers, and industry are provided. RESULTS: Common themes around DOC participation include peer support, advocacy, self-expression, seeking and sharing diabetes information, improving approaches to diabetes data management, and humor. Potential risks include access to misinformation and threats to individuals' privacy, though there are limited data on negative outcomes resulting from such activities. Likewise, few data are available regarding the impact of DOC involvement on glycemic outcomes, but initial research suggests a positive impact on emotional experiences, attitudes toward diabetes, and engagement in diabetes management behaviors. CONCLUSION: The range of DOC participants, activities, and platforms is growing rapidly. The Internet provides opportunities to strengthen communication and support among individuals with diabetes, their families, health care providers, the health care industry, policy makers, and the general public. Research is needed to investigate the impact of DOC participation on self-management, quality of life, and glycemic control, and to design and evaluate strategies to maximize its positive impact.

User-centered design and the development of patient decision aids: protocol for a systematic review.

BACKGROUND: Providing patient-centered care requires that patients partner in their personal health-care decisions to the full extent desired. Patient decision aids facilitate processes of shared decision-making between patients and their clinicians by presenting relevant scientific information in balanced, understandable ways, helping clarify patients' goals, and guiding decision-making processes. Although international standards stipulate that patients and clinicians should be involved in decision aid development, little is known about how such involvement currently occurs, let alone best practices. This systematic review consisting of three interlinked subreviews seeks to describe current practices of user involvement in the development of patient decision aids, compare these to practices of user-centered design, and identify promising strategies. METHODS/DESIGN: A research team that includes patient and clinician representatives, decision aid developers, and systematic review method experts will guide this review according to the Cochrane Handbook and PRISMA reporting guidelines. A medical librarian will hand search key references and use a peer-reviewed search strategy to search MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore, and Google Scholar. We will identify articles across all languages and years describing the development or evaluation of a patient decision aid, or the application of user-centered design or human-centered design to tools intended for patient use. Two independent reviewers will assess article eligibility and extract data into a matrix using a structured pilot-tested form based on a conceptual framework of user-centered design. We will synthesize evidence to describe how research teams have included users in their development process and compare these practices to user-centered design methods. If data permit, we will develop a measure of the user-centeredness of development processes and identify practices that are likely to be optimal. DISCUSSION: This systematic review will provide evidence of current practices to inform approaches for involving patients and other stakeholders in the development of patient decision aids. We anticipate that the results will help move towards the establishment of best practices for the development of patient-centered tools and, in turn, help improve the experiences of people who face difficult health decisions. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42014013241.