BACKGROUND: The National Hemophilia Foundation (NHF) conducted extensive, inclusive community consultations to guide prioritization of research in coming decades in alignment with its mission to find cures and address and prevent complications enabling people and families with blood disorders to thrive. RESEARCH DESIGN AND METHODS: With the American Thrombosis and Hemostasis Network, NHF recruited multidisciplinary expert working groups (WG) to distill the community-identified priorities into concrete research questions and score their feasibility, impact, and risk. WG6 was charged with identifying the infrastructure, workforce development, and funding and resources to facilitate the prioritized research. Community input on conclusions was gathered at the NHF State of the Science Research Summit. RESULTS: WG6 detailed a minimal research capacity infrastructure threshold, and opportunities to enable its attainment, for bleeding disorders centers to participate in prospective, multicenter national registries. They identified challenges and opportunities to recruit, retain, and train the diverse multidisciplinary care and research workforce required into the future. Innovative collaborative approaches to trial design, resource networking, and funding to surmount obstacles facing research in rare disorders were elucidated. CONCLUSIONS: The innovations in infrastructure, workforce development, and resources and funding proposed herein may contribute to facilitating a National Research Blueprint for Inherited Bleeding Disorders.
Research is critical to advancing the diagnosis and care of people with inherited bleeding disorders (PWIBD). This research requires significant infrastructure, including people and resources. Hemophilia treatment centers (HTC) need many different skilled care professionals including doctors, nurses, and other providers; also statisticians, data managers, and other experts to process patients' clinical information into research. Attracting diverse qualified professionals to the clinical and research work requires long-term planning, recruiting individuals in training programs and retaining them as they become experts. Research infrastructure includes physical servers running database software, networks that link them, and the environment in which these components function. US Centers for Disease Control and Prevention (CDC) and American Thrombosis and Hemostasis Network (ATHN) coordinate and fund data collection at HTCs on the health and well-being of thousands of PWIBD into a registry used in research studies.National Hemophilia Foundation (NHF) and ATHN asked our group of health care professionals, technology experts, and lived experience experts (LEE) to identify the infrastructure, workforce, and resources needed to do the research most important to PWIBD. We identified the types of CDC/ATHN studies all HTCs should be able to perform, and the physical and human infrastructure this requires. We prioritized finding the best clinical trial designs to study inherited bleeding disorders, identifying ways to share personnel and tools between HTCs, and innovating how research is governed and funded. Involving LEEs in designing, managing, and carrying out research will be key in conducting research to improve the lives of PWIBD.
Hemophilia A , Thrombosis , Humans , United States , Prospective Studies , Hemostasis , Workforce
[This corrects the article DOI: 10.2196/17595.].
BACKGROUND: The social media site Twitter has 145 million daily active users worldwide and has become a popular forum for users to communicate their health care concerns and experiences as patients. In the fall of 2018, a hashtag titled #DoctorsAreDickheads emerged, with almost 40,000 posts calling attention to health care experiences. OBJECTIVE: This study aims to identify common health care conditions and conceptual themes represented within the phenomenon of this viral Twitter hashtag. METHODS: We analyzed a random sample of 5.67% (500/8818) available tweets for qualitative analysis between October 15 and December 31, 2018, when the hashtag was the most active. Team coders reviewed the same 20.0% (100/500) tweets and the remainder individually. We abstracted the user's health care role and clinical conditions from the tweet and user profile, and used phenomenological content analysis to identify prevalent conceptual themes through sequential open coding, memoing, and discussion of concepts until an agreement was reached. RESULTS: Our final sample comprised 491 tweets and unique Twitter users. Of this sample, 50.5% (248/491) were from patients or patient advocates, 9.6% (47/491) from health care professionals, 4.3% (21/491) from caregivers, 3.7% (18/491) from academics or researchers, 1.0% (5/491) from journalists or media, and 31.6% (155/491) from non-health care individuals or other. The most commonly mentioned clinical conditions were chronic pain, mental health, and musculoskeletal conditions (mainly Ehlers-Danlos syndrome). We identified 3 major themes: disbelief in patients' experience and knowledge that contributes to medical errors and harm, the power inequity between patients and providers, and metacommentary on the meaning and impact of the #DoctorsAreDickheads hashtag. CONCLUSIONS: People publicly disclose personal and often troubling health care experiences on Twitter. This adds new accountability for the patient-provider interaction, highlights how harmful communication affects diagnostic safety, and shapes the public's viewpoint of how clinicians behave. Hashtags such as this offer valuable opportunities to learn from patient experiences. Recommendations include developing best practices for providers to improve communication, supporting patients through challenging diagnoses, and promoting patient engagement.
As a part of a larger, mixed-methods research study, we conducted semi-structured interviews with 21 adults with depressive symptoms to understand the role that past health care discrimination plays in shaping help-seeking for depression treatment and receiving preferred treatment modalities. We recruited to achieve heterogeneity of racial/ethnic backgrounds and history of health care discrimination in our participant sample. Participants were Hispanic/Latino (n = 4), non-Hispanic/Latino Black (n = 8), or non-Hispanic/Latino White (n = 9). Twelve reported health care discrimination due to race/ethnicity, language, perceived social class, and/or mental health diagnosis. Health care discrimination exacerbated barriers to initiating and continuing depression treatment among patients from diverse backgrounds or with stigmatized mental health conditions. Treatment preferences emerged as fluid and shaped by shared decisions made within a trustworthy patient-provider relationship. However, patients who had experienced health care discrimination faced greater challenges to forming trusting relationships with providers and thus engaging in shared decision-making processes.
Delivery of Health Care , Depression , Racism , Adult , Black or African American , Depression/therapy , Ethnicity , Hispanic or Latino , Humans , Patient Acceptance of Health Care
Background: Integrating behavioral health (BH) services into primary care is an evidence-based intervention that can increase access to care, improve patient outcomes, and decrease costs. Digital technology, including smartphone apps, has the potential to augment and extend the reach of these integrated behavioral health services through self-management support impacting lifestyle behaviors. To date, the feasibility and acceptability of using mental health mobile apps within an integrated primary care setting has not yet been explored as part of routine clinical care. Objectives: The objectives of this study were to (a) test the feasibility of using mental health applications to augment integrated primary care services; (b) solicit feedback from patients and providers to guide implementation, and (c) develop a mental health apps toolkit for system-wide dissemination. Methods: Cambridge Health Alliance (CHA) is a safety-net healthcare system that includes three community hospitals and 12 Primary Care (PC) clinics serving nearly 150,000 ethnically and socioeconomically diverse patients around Boston. To select and disseminate mental health apps, a four-phase implementation was undertaken: (1) Evaluation of mental health mobile applications (2) Development of an apps toolkit with stakeholder input, (3) Conducting initial pilot at six primary care locations, and (4) Rolling out the app toolkit across 12 primary care sites and conducting 1-year follow-up survey. Results: Among BH providers, 24 (75%) responded to the follow-up survey and 19 (83%) indicated they use apps as part of their clinical care. Anxiety was the most common condition for which app use was recommended by providers, and 10 (42%) expressed interest in further developing their knowledge of mental health apps. Among patients, 35 (65%) of participants provided feedback; 23 (66%) reported the tools to be helpful, especially for managing stress and anxiety. Conclusions: Our findings indicate mental health apps are applicable and relevant to patients within integrated primary care settings in safety-net health systems. Behavioral health providers perceive the clinical value of using these tools as part of patient care, but require training to increase their comfort-level and confidence applying these tools with patients. To increase provider and patient engagement, mobile apps must be accessible, simple, intuitive and directly relevant to patients' treatment needs.
