The benefits and burdens of patient advocacy.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 204-204
Author(s):  
Shelley Fuld Nasso ◽  
Laura Diane Porter ◽  
Kristen K. McNiff Landrum

204 Background: Patient advocates share their time and experience to improve cancer research, care, and support. Advocacy can be rewarding and empowering, and survivors and caregivers express a variety of reasons for engaging in advocacy. Yet, advocacy can also come with mental and emotional costs. Challenges include the grief of losing friends to cancer, the related “survivors’ guilt”, and the burden of repeatedly reliving their experience. The National Coalition for Cancer Survivorship (NCCS) conducted a survey to better understand the experience of patient advocates, and actions that organizations can take to recognize and support advocates. Methods: NCCS convened two focus groups with 10 advocates (the “working group”) to understand factors that contribute to advocates feeling rewarded or burned out from advocacy. We reviewed the transcripts to identify themes and reviewed the literature. We developed a survey and included a validated, non-proprietary, single-item burnout measure used for health care professionals. We built the survey online and tested with select working group members. We disseminated the survey to NCCS’ advocacy network, and working group members shared with their networks. Results: As of June 1, we received 176 responses, with the survey will open for another week. The initial data show that the vast majority of respondents find their advocacy work rewarding (97%), empowering (93%), and a positive impact on their lives (96%). At the same time, 29.5% of respondents indicated they have symptoms of burnout, including emotional and physical exhaustion. Respondents report that their advocacy work results in exhaustion (50.7%), sadness (41.1%), and anxiousness (28.7%). More than a third (36.7%) said that grief makes it hard to maintain their work as advocates. A majority manage the demands of their advocacy work by practicing self-care (66.6%) and using coping strategies (62.5%). Advocates shared the specific practices and strategies they used. Less than half (42.5%) said they set boundaries between their advocacy work and their personal life. The final analysis of the survey data will be complete by the end of June 2021. Conclusions: The phrase, “Nothing about us, without us,” has guided the inclusion of patient and caregiver voices in the design of research, care delivery, research grant review, quality measurement, and other aspects of cancer care and cancer research. Yet organizations that ask for the mental and emotional labor of advocates, including patient organizations, researchers, health care professionals, government institutions, and pharmaceutical companies, should understand the costs to advocates and how to best support them. As one respondent said, “Perhaps organizations could set the stage for this work by openly validating the toll that cancer itself takes, and acknowledge that advocacy takes energy and commitment, which may not always be possible to sustain in the face of ongoing treatment or other life complications.”

2021 ◽  
pp. 104973232199864
Author(s):  
Nabil Natafgi ◽  
Olayinka Ladeji ◽  
Yoon Duk Hong ◽  
Jacqueline Caldwell ◽  
C. Daniel Mullins

This article aims to determine receptivity for advancing the Learning Healthcare System (LHS) model to a novel evidence-based health care delivery framework—Learning Health Care Community (LHCC)—in Baltimore, as a model for a national initiative. Using community-based participatory, qualitative approach, we conducted 16 in-depth interviews and 15 focus groups with 94 participants. Two independent coders thematically analyzed the transcripts. Participants included community members (38%), health care professionals (29%), patients (26%), and other stakeholders (7%). The majority considered LHCC to be a viable model for improving the health care experience, outlining certain parameters for success such as the inclusion of home visits, presentation of research evidence, and incorporation of social determinants and patients’ input. Lessons learned and challenges discussed by participants can help health systems and communities explore the LHCC aspiration to align health care delivery with an engaged, empowered, and informed community.


Author(s):  
Anmol Arora ◽  
Andrew Wright ◽  
Mark Cheng ◽  
Zahra Khwaja ◽  
Matthew Seah

AbstractHealthcare as an industry is recognised as one of the most innovative. Despite heavy regulation, there is substantial scope for new technologies and care models to not only boost patient outcomes but to do so at reduced cost to healthcare systems and consumers. Promoting innovation within national health systems such as the National Health Service (NHS) in the United Kingdom (UK) has been set as a key target for health care professionals and policy makers. However, while the UK has a world-class biomedical research industry, several reports in the last twenty years have highlighted the difficulties faced by the NHS in encouraging and adopting innovations, with the journey from idea to implementation of health technology often taking years and being very expensive, with a high failure rate. This has led to the establishment of several innovation pathways within and around the NHS, to encourage the invention, development and implementation of cost-effective technologies that improve health care delivery. These pathways span local, regional and national health infrastructure. They operate at different stages of the innovation pipeline, with their scope and work defined by location, technology area or industry sector, based on the specific problem identified when they were set up. In this introductory review, we outline each of the major innovation pathways operating at local, regional and national levels across the NHS, including their history, governance, operating procedures and areas of expertise. The extent to which innovation pathways address current challenges faced by innovators is discussed, as well as areas for improvement and future study.


2008 ◽  
Vol 17 (01) ◽  
pp. 114-127 ◽  
Author(s):  
Rodolphe Meyer ◽  
Patrice Degoulet

Summary Objectives To examine the different methods that can be used in the quantification of the added value of information technologies (IT) in the health care sector. This quantification represents a major issue for decision-makers and health care professionals when they have to plan an IT investment. MethodsArticles were chosen via Medline, internet and the University of Geneva bibliographic portal. Some of the papers were obtained directly from their authors. We examine the most current methods used to evaluate IT return on investment (ROI) in the general business and in the health care sector, drawing attention on methods traditionally used in macro economic studies that could reveal themselves disruptive for IT ROI impact evaluation in hospitals. Results Financial and accounting methods can provide interesting data on a specific IT project but are usually incomplete for revealing the global IT investment influence. Econometric methods tend to demonstrate the positive impact of health care IT (HIT) on hospital production and productivity. Hospitals having higher levels of IT investment tend to deliver a higher level of clinical quality and show improved hospital cost performances. Conclusions Information technologies are so intermingled with people and processes that the identification of specific IT benefit remains questionable. Using macro economic tools could be the best way to analyze and compute IT ROI in health care. Econometric tools take into account all types investments (inputs) and all the returns (outputs) enabling the precise measurement of IT investments impact, breakeven points, and possible threshold levels, thus providing helpful intelligence to reach the higher levels of IT governance in hospitals.


2018 ◽  
Vol 38 (6) ◽  
pp. e1-e4 ◽  
Author(s):  
Christina Canfield ◽  
Sandra Galvin

Since 2010, health care organizations have rapidly adopted telemedicine as part of their health care delivery system to inpatients and outpatients. The application of telemedicine in the intensive care unit is often referred to as tele-ICU. In telemedicine, nurses, nurse practitioners, physicians, and other health care professionals provide patient monitoring and intervention from a remote location. Tele-ICU presence has demonstrated positive outcomes such as increased adherence to evidence-based care and improved perception of support at the bedside. Despite the successes, acceptance of tele-ICU varies. Known barriers to acceptance include perceptions of intrusiveness and invasion of privacy.


2015 ◽  
Vol 17 (6) ◽  
pp. 371-379 ◽  
Author(s):  
Julie McGarry ◽  
Charley Baker ◽  
Claire Wilson ◽  
Anne Felton ◽  
Anirban Banerjee

Purpose – It is now widely acknowledged that health care professionals on the front line of care delivery will often be among the first to whom patients or clients who have experienced abuse will present or disclose abuse in a clinical context. It is therefore of pivotal importance that all health care professionals, including nurses, are adequately prepared at the earliest opportunity to effectively respond to a disclosure of abuse or identify where abuse may be suspected. The paper aims to discuss these issues. Design/methodology/approach – In order to address this contemporary challenge within health care the authors present a model, developed in the UK, for the embedding of safeguarding knowledge, skills and attitudes within undergraduate pre-registration nursing curricula. This model is integrative and focuses on the acquisition of knowledge and skills in the field of safeguarding vulnerable adults and children. Findings – Student evaluation to date has been extremely positive with the majority of student responses indicating that individuals felt that they had received the requisite level of educational support and knowledge to enable them to recognise concerns. However, it was also clear that students felt that the knowledge gained within the classroom setting needed to be effectively supported and translated in the practice setting. Practical implications – Safeguarding clearly forms a central part of professional accountability and responsibility. It is therefore pivotal that professionals receive the requisite education, skills and knowledge at the earliest opportunity. Originality/value – To the authors’ knowledge this initiative is novel in approach and as such has the potential to inform similar education programmes.


Author(s):  
Olaide Oluwole-Sangoseni ◽  
Michelle Jenkins-Unterberg

Background: Attempts to address health and health care disparities in the United States have led to a renewed focus on the training of healthcare professionals including physical therapists. Current health care policies emphasize culturally competent care as a means of promoting equity in care delivery by health care professionals. Experts agree that cultural insensitivity has a negative association with health professionals’ ability to provide quality care. Objective: To evaluate the cultural awareness and sensitivity of physical therapy (PT) students in a didactic curriculum aimed to increase cultural awareness. Methods: Using the Multicultural Sensitivity Scale (MSS), a cross-sectional survey was conducted to assess cultural sensitivity among three groups of students, (N = 139) from a doctor of physical therapy (DPT) program at a liberal arts university in Saint Louis, MO. Results: Response rate was 76.3%. Participants (n=100) were students in first (DPT1, n=36), third (DPT3, n=36), and sixth (DPT6, n=28) year of the program. Mean ranked MSS score was DPT1 = 45.53, DPT3 = 46.60 DPT6 = 61.91. Kruskal-Wallis analysis of the mean ranked scores showed a significant difference among three groups, H = 6.05 (2, N=100), p ≤ .05. Discussion: Students who have completed the cultural awareness curriculum, and undergone clinical experiences rated themselves higher on the cultural sensitivity/awareness. Results provide initial evidence that experiential learning opportunities may help PT students to more effectively integrate knowledge from classroom activities designed to facilitate cultural competence.


2021 ◽  
Author(s):  
Rochelle D. Jones ◽  
Chris Krenz ◽  
Kent A. Griffith ◽  
Rebecca Spence ◽  
Angela R. Bradbury ◽  
...  

PURPOSE: Scholars have examined patients' attitudes toward secondary use of routinely collected clinical data for research and quality improvement. Evidence suggests that trust in health care organizations and physicians is critical. Less is known about experiences that shape trust and how they influence data sharing preferences. MATERIALS AND METHODS: To explore learning health care system (LHS) ethics, democratic deliberations were hosted from June 2017 to May 2018. A total of 217 patients with cancer participated in facilitated group discussion. Transcripts were coded independently. Finalized codes were organized into themes using interpretive description and thematic analysis. Two previous analyses reported on patient preferences for consent and data use; this final analysis focuses on the influence of personal lived experiences of the health care system, including interactions with providers and insurers, on trust and preferences for data sharing. RESULTS: Qualitative analysis identified four domains of patients' lived experiences raised in the context of the policy discussions: (1) the quality of care received, (2) the impact of health care costs, (3) the transparency and communication displayed by a provider or an insurer to the patient, and (4) the extent to which care coordination was hindered or facilitated by the interchange between a provider and an insurer. Patients discussed their trust in health care decision makers and their opinions about LHS data sharing. CONCLUSION: Additional resources, infrastructure, regulations, and practice innovations are needed to improve patients' experiences with and trust in the health care system. Those who seek to build LHSs may also need to consider improvement in other aspects of care delivery.


2019 ◽  
Vol 35 (3) ◽  
pp. 185-191 ◽  
Author(s):  
David A. Agom ◽  
Stuart Allen ◽  
Sarah Neill ◽  
Judith Sixsmith ◽  
Helen Poole ◽  
...  

Background: There is a dearth of research focusing on identifying the social complexities impacting on oncology and palliative care (PC), and no study has explored how the health-care system in Nigeria or other African contexts may be influencing utilization of these services. Aim: This study explored how social complexities and the organization of health-care influenced the decision-making process for the utilization of oncology and PC in a Nigerian hospital. Methods: This qualitative study used an interpretive descriptive design. Data were collected using semistructured interview guides with 40 participants, comprising health-care professionals, patients, and their families. Thematic analysis was conducted to generate and analyze patterns within the data. Findings: Three themes were identified: dysfunctional structural organization of the health-care delivery system, service-users’ economic status, and the influence of social networks. The interrelationship between the themes result in patients and their family members decisions either to present late to the hospital, miss their clinical appointments, or not to seek oncological health care and PC. Conclusion: This article offers insights into the role of the health-care system, as organized currently in Nigeria, as “autoinhibitory” and not adequately prepared to address the increasing burden of cancer. We therefore argue that there is a need to restructure the Nigerian health-care system to better meet the needs of patients with cancer and their families as failure to do so will strengthen the existing inequalities, discourage usage, and increase mortality.


2002 ◽  
Vol 9 (5) ◽  
pp. 472-482 ◽  
Author(s):  
Deirdre Hyland

The purpose of this article is to examine whether patient/client autonomy is always compatible with the nurse’s role of advocacy. The author looks separately at the concepts of autonomy and advocacy, and considers them in relation to the reality of clinical practice from professional, ethical and legal perspectives. Considerable ambiguity is found regarding the legitimacy of claims of a unique function for nurses to act as patient advocates. To act as an advocate may put nurses at personal and professional risk. It may also be deemed arrogant and insulting to other health care professionals. Patient autonomy can be seen as a subcategory of the right of every individual to self-determination, and as such is protected by law. However, it is questionable whether the traditionally paternalistic approach to health care provision truly respects the autonomous rights of each patient. The author considers examples and cases from the literature that resulted in professional and/or personal difficulties for the nurses involved, and also reflects on an incident from her own practice where a positive outcome was achieved that demonstrated compatibility between the concepts under consideration.


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