Building a Model of Advocacy: Improving the Dementia Capability of Managed Care Health Plans in California

Given the growing prevalence of Alzheimer’s Disease and related dementias, and the intensity of this population’s care needs, it is imperative that health plans (HPs) increase their dementia-capability. The Dementia Cal MediConnect (Dementia CMC) project proposes an innovative model of health care advocacy that can create dementia-capable systems change. The Dementia CMC project was a partnership (2013 – 2018) between local Alzheimer’s organizations and ten managed care HPs in California. It used the following model of health care advocacy: 1) Identify dementia-capable best practices to set as systems change indicators; 2) Identify and leverage public policies in support of systems change indicators; 3) Identify and engage champions; 4) Develop and advocate for a value and business case to improve dementia care; 5) Identify gaps in dementia-capable practices; 6) Provide technical assistance, tools, and staff training to address the gaps in dementia-capable practices; and 7) Track systems change. Systems change data was collected through participant observation with HPs and interviews with key informants. HPs reported making systems changes toward more dementia-capable practices such as: better pathways for identification and diagnosis; better identification, assessment, support, and engagement of caregivers; and improved systems of referral to Alzheimer’s organizations. Some indicators of systems change were inconclusive as a result of variability in HP practices and the lack of common record systems between HPs and providers. The application of this advocacy model has led to systems changes that can be replicated to improve care for people living with dementia and their caregivers.

Healthassist, Inc.: leading through a pandemic

Case study abstract The purpose of this case study is to illustrate how Dianne Savastano, founder and CEO of Healthassist, Inc., a US-based health-care advocacy firm, successfully led her clients and team through the COVID-19 pandemic of 2020. To gather the data for this case study, the authors interviewed the protagonists, the members of her team and two clients. The authors read Healthassist Newsletters and the firm’s documents; and in fact, they included one Newsletter and several documents in the Exhibits of the case study. The authors conducted a literature review for articles in newspapers and journals about the newly developing field of “health-care advocacy,” a field which Savastano helped to create. Findings of the case study The authors illustrate how Savastano, using the five practices of exemplary leadership by Kouzes and Posner, in The Leadership Challenge, led her team through the pandemic of 2020. This is a story of a woman leader, using traits such as warmth, empathy, analysis and decisiveness, keeps her small business afloat when so many other firms collapsed in 2020. Research The authors conducted seven interviews and literature searches on the topics of health-care advocacy; women leaders; leading through a crisis; and COVID-19. Practical implications The case study illustrates how a woman founder and CEO can lead her firm through a crisis. Value of the case study This is an example of how a woman leader managed through the 2020 pandemic. Subject code CSS 3: Entrepreneurship

Use of Health Apps and Wearable Devices: Survey Among Italian Associations for Patient Advocacy (Preprint)

BACKGROUND Technological tools such as Web-based social networks, telemedicine, apps, or wearable devices are becoming more widespread in health care like elsewhere. Although patients are the main users, for example, to monitor symptoms and clinical parameters or to communicate with the doctor, their perspective is seldom analyzed, and to the best of our knowledge, no one has focused on the patients’ health care advocacy associations’ point of view. OBJECTIVE The objective of this study was to assess patients’ health care advocacy associations’ opinions about the use, usefulness, obstacles, negative aspects, and impact of health apps and wearable devices through a Web-based survey. METHODS We conducted a Web-based survey through SurveyMonkey over nearly 3 months. Participants were contacted via an email explaining the aims of the survey and providing a link to complete the Web-based questionnaire. All the 20 items were mandatory, and the anonymized data were collected automatically into a database. Only fully completed questionnaires were considered for analysis. RESULTS We contacted 1998 patients’ health care advocacy associations; a total of 258 questionnaires were received back (response rate 12.91%), and 227 of the received questionnaires were fully completed (completion rate 88.0%). Informative apps, hospital apps for viewing medical reports or booking visits, and those for monitoring physical activity are the most used. They are considered especially useful to improve patients’ engagement and compliance with treatment. Wearable devices to check physical activity and glycemia are the most widespread considering, again, their benefits in increasing patients’ involvement and treatment compliance. For health apps and wearable devices, the main obstacles to their use are personal and technical reasons; the risk of overmedicalization is considered the most negative aspect of their constant use, while privacy and confidentiality of data are not rated a limitation. No statistical difference was found on stratifying the answers by responders’ technological level (P=.30), age (P=.10), and the composition of the association’s advisory board (P=.15). CONCLUSIONS According to responders, health apps and wearable devices are sufficiently known and used and are considered potential supports for greater involvement in health management. However, there are still obstacles to their adoption, and the developers need to work to make them more accessible and more useful. The involvement of patients and their associations in planning services and products based on these technologies (as well as others) would be desirable to overcome these barriers and boost awareness about privacy and the confidentiality of data.