Aj Scheitler

Building fair, equitable, and beneficial partnerships between institutions collaborating in research in low- and middle-income countries (LMIC) and high-income countries (HIC) has become an integral part of research capacity building in global health in recent years. In this paper, we offer an example of an academic collaboration between the University of California Los Angeles, Center for Health Policy and Research (UCLA CHPR) and the University of Philippines, Manila, College of Public Health (UPM CPH) that sought to build an equitable partnership between research institutions. The partnership was built on a project to build capacity for research and produce data for policy action for the prevention and care of non-communicable diseases (NCDs) through primary healthcare in the Philippines. The specific objectives of the project were to: (1) locally adapt the Primary Care Assessment Tool for the Philippines and use the adapted tool to measure facility-level primary care delivery, (2) conduct focus group discussions (FGDs) to gather qualitative observations regarding primary care readiness and capacity, and (3) conduct a comprehensive population-based health survey among adults on NCDs and prior healthcare experience. We describe here the progression of the partnership between these institutions to carry out the project and the elements that helped build a stronger connection between the institutions, such as mutual goal setting, cultural bridging, collaborative teams, and capacity building. This example, which can be used as a model depicting new directionality and opportunities for LMIC-HIC academic partnerships, was written based on the review of shared project documents, including study protocols, and written and oral communications with the project team members, including the primary investigators. The innovation of this partnership includes: LMIC-initiated project need identification, LMIC-based funding allocation, a capacity-building role of the HIC institution, and the expansion of scope through jointly offered courses on global health.

Background: Real-time, rapid assessment of barriers to care experienced by patients can be used to inform relevant health care legislation. In recent years, online communities have become a source of support for patients as well as a vehicle for discussion and collaboration among patients, clinicians, advocates, and researchers. The Breast Cancer Social Media (#BCSM) community has hosted weekly Twitter chats since 2011. Topics vary each week, and chats draw a diverse group of participants. Partnering with the #BCSM community, we used Twitter to gather data on barriers to care for patients with metastatic breast cancer and potential policy solutions. Metastatic breast cancer survival rates are low and in large part conditioned by time-sensitive access to care factors that might be improved through policy changes. Objective: This study was part of an assessment of the barriers to care for metastatic breast cancer with the goal of offering policy solutions for the legislative session in California. Methods: We provided 5 questions for a chat specific to metastatic breast cancer care barriers and potential policy solutions. These were discussed during the course of a #BCSM chat on November 18, 2019. We used Symplur (Symplur LLC) analytics to generate a transcript of tweets and a profile of participants. Responses to the questions are presented in this paper. Results: There were 288 tweets from 42 users, generating 2.1 million impressions during the 1-hour chat. Participants included 23 patient advocates (most of whom were patients themselves), 7 doctors, 6 researchers or academics, 3 health care providers (2 nurses, 1 clinical psychologist), and 2 advocacy organizations. Participants noted communication gaps between patient and provider especially as related to the need for individualized medication dosing to minimize side effects and maximize quality of life. Timeliness of insurance company response, for example, to authorize treatments, was also a concern. Chat participants noted that palliative care is not well integrated into metastatic breast cancer care and that insurance company denials of coverage for these services were common. Regarding financial challenges, chat participants mentioned unexpected copays, changes in insurance drug formularies that made it difficult to anticipate drug costs, and limits on the number of physical therapy visits covered by insurance. Last, on the topic of disability benefits, participants expressed frustration about how to access disability benefits. When prompted for input regarding what health system and policy changes are necessary, participants suggested a number of ideas, including expanding the availability of nurse navigation for metastatic breast cancer, developing and offering a guide for the range of treatment and support resources patients with metastatic breast cancer, and improving access to clinical trials. Conclusions: Rapid assessments drawing from online community insights may be a critical source of data that can be used to ensure more responsive policy action to improve patient care.

BACKGROUND Real-time, rapid assessment of barriers to care experienced by patients can be used to inform relevant health care legislation. In recent years, online communities have become a source of support for patients as well as a vehicle for discussion and collaboration among patients, clinicians, advocates, and researchers. The Breast Cancer Social Media (#BCSM) community has hosted weekly Twitter chats since 2011. Topics vary each week, and chats draw a diverse group of participants. Partnering with the #BCSM community, we used Twitter to gather data on barriers to care for patients with metastatic breast cancer and potential policy solutions. Metastatic breast cancer survival rates are low and in large part conditioned by time-sensitive access to care factors that might be improved through policy changes. OBJECTIVE This study was part of an assessment of the barriers to care for metastatic breast cancer with the goal of offering policy solutions for the legislative session in California. METHODS We provided 5 questions for a chat specific to metastatic breast cancer care barriers and potential policy solutions. These were discussed during the course of a #BCSM chat on November 18, 2019. We used Symplur (Symplur LLC) analytics to generate a transcript of tweets and a profile of participants. Responses to the questions are presented in this paper. RESULTS There were 288 tweets from 42 users, generating 2.1 million impressions during the 1-hour chat. Participants included 23 patient advocates (most of whom were patients themselves), 7 doctors, 6 researchers or academics, 3 health care providers (2 nurses, 1 clinical psychologist), and 2 advocacy organizations. Participants noted communication gaps between patient and provider especially as related to the need for individualized medication dosing to minimize side effects and maximize quality of life. Timeliness of insurance company response, for example, to authorize treatments, was also a concern. Chat participants noted that palliative care is not well integrated into metastatic breast cancer care and that insurance company denials of coverage for these services were common. Regarding financial challenges, chat participants mentioned unexpected copays, changes in insurance drug formularies that made it difficult to anticipate drug costs, and limits on the number of physical therapy visits covered by insurance. Last, on the topic of disability benefits, participants expressed frustration about how to access disability benefits. When prompted for input regarding what health system and policy changes are necessary, participants suggested a number of ideas, including expanding the availability of nurse navigation for metastatic breast cancer, developing and offering a guide for the range of treatment and support resources patients with metastatic breast cancer, and improving access to clinical trials. CONCLUSIONS Rapid assessments drawing from online community insights may be a critical source of data that can be used to ensure more responsive policy action to improve patient care.