scholarly journals Making community voices heard in a research–health service alliance, the evolving role of the Community Advisory Group: a case study from the members’ perspective

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Janet L. Wale ◽  
Louisa Di Pietro ◽  
Heather Renton ◽  
Margaret Sahhar ◽  
Christine Walker ◽  
...  
Keyword(s):  
Health Care ◽  
Informed Consent ◽  
Patient Care ◽  
Data Storage ◽  
Program Planning ◽  
Genomic Data ◽  
Advisory Group ◽  
Main Body ◽  
Full Spectrum ◽  
Community Advisory Group

Abstract Background The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program. This was to ensure consideration of community values, perspectives and priorities, and knowledge translation for patient care. The CAG was charged with providing a strong community voice for the duration of the program. Appointed members were experienced consumer advocates with developed connections to the community. Main body The Alliance progressed from an initial Demonstration Project (2013–2015) to a multifaceted program (2016–2020). The CAG worked strategically to help address complex issues, for example, communication, privacy, informed consent, ethics, patient experience, measurement and evaluation standards and policies, data storage and re-use of genomic data. Many aspects of translating genomics into routine care have been tackled, such as communicating with patients invited to have genomic testing, or their caregivers, and obtaining informed consent, clinical questions across 16 areas of health care, training and education of health and laboratory professionals, genomic data management and data-sharing. Evidence generated around clinical utility and cost-effectiveness led to government funding of testing for complex genetic conditions in children. Conclusion The CAG activities, recorded in a CAG-inspired Activity register, span the full spectrum of information sharing and consultation to co-design and partnership. The CAG were involved at multiple levels of participation and in all tiers of activity including governance, development of policies and procedures, program planning and evaluation. Working relationships were built up and a level of trust instilled to advance the Alliance work program in ensuring an effective patient-care model of delivery of genomics. CAG input into project deliverables has been tangible. Less tangible contributions included presentations at external meetings and conferences, direct interactions at meetings with Alliance members, interactions with visitors and external experts, taking part in consultations with experts, state and federal government.

Teletinnitus Program at the VA Gulf Coast Veterans Health Care System

2014 ◽  
Vol 4 (1) ◽  
pp. 23-29
Author(s):  
Constance Hilory Tomberlin
Keyword(s):  
Health Care ◽  
Patient Satisfaction ◽  
Patient Care ◽  
Health Care System ◽  
Gulf Coast ◽  
New Technology ◽  
Cost Effective ◽  
Veterans Health ◽  
Potential Benefits ◽  
Care System

There are a multitude of reasons that a teletinnitus program can be beneficial, not only to the patients, but also within the hospital and audiology department. The ability to use technology for the purpose of tinnitus management allows for improved appointment access for all patients, especially those who live at a distance, has been shown to be more cost effective when the patients travel is otherwise monetarily compensated, and allows for multiple patient's to be seen in the same time slots, allowing for greater access to the clinic for the patients wishing to be seen in-house. There is also the patient's excitement in being part of a new technology-based program. The Gulf Coast Veterans Health Care System (GCVHCS) saw the potential benefits of incorporating a teletinnitus program and began implementation in 2013. There were a few hurdles to work through during the beginning organizational process and the initial execution of the program. Since the establishment of the Teletinnitus program, the GCVHCS has seen an enhancement in patient care, reduction in travel compensation, improvement in clinic utilization, clinic availability, the genuine excitement of the use of a new healthcare media amongst staff and patients, and overall patient satisfaction.

Ethical Visions for the Development of Patient Care in the Health Care Practice

2019 ◽  
Vol 2 (1) ◽  
pp. 27-34
Author(s):  
Richard Moreno ◽  
◽  
Cristinel Ștefănescu ◽  
Beatrice Gabriela Ioan ◽  
Mariana Cuceu ◽  
...  
Keyword(s):  
Health Care ◽  
Patient Care ◽  
Care Practice ◽  
Health Care Practice

scholarly journals Integrating Genomic Screening into Primary Care: Provider Experiences Caring for Latino Patients at a Community-Based Health Center

2021 ◽  
Vol 12 ◽  
pp. 215013272110002
Author(s):  
Tarika Srinivasan ◽  
Erica J. Sutton ◽  
Annika T. Beck ◽  
Idali Cuellar ◽  
Valentina Hernandez ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Patient Care ◽  
Health Center ◽  
Care Provider ◽  
Primary Care Provider ◽  
Genomic Sequencing ◽  
Community Based ◽  
Genomic Screening

Introduction: Minority communities have had limited access to advances in genomic medicine. Mayo Clinic and Mountain Park Health Center, a Federally Qualified Health Center in Phoenix, Arizona, partnered to assess the feasibility of offering genomic screening to Latino patients receiving care at a community-based health center. We examined primary care provider (PCP) experiences reporting genomic screening results and integrating those results into patient care. Methods: We conducted open-ended, semi-structured interviews with PCPs and other members of the health care team charged with supporting patients who received positive genomic screening results. Interviews were recorded, transcribed, and analyzed thematically. Results: Of the 500 patients who pursued genomic screening, 10 received results indicating a genetic variant that warranted clinical management. PCPs felt genomic screening was valuable to patients and their families, and that genomic research should strive to include underrepresented minorities. Providers identified multiple challenges integrating genomic sequencing into patient care, including difficulties maintaining patient contact over time; arranging follow-up medical care; and managing results in an environment with limited genetics expertise. Providers also reflected on the ethics of offering genomic sequencing to patients who may not be able to pursue diagnostic testing or follow-up care due to financial constraints. Conclusions: Our results highlight the potential benefits and challenges of bringing advances in precision medicine to community-based health centers serving under-resourced populations. By proactively considering patient support needs, and identifying financial assistance programs and patient-referral mechanisms to support patients who may need specialized medical care, PCPs and other health care providers can help to ensure that precision medicine lives up to its full potential as a tool for improving patient care.

Denial of Health Care and Informed Consent in English and American Law

1992 ◽  
Vol 18 (1-2) ◽  
pp. 37-71
Author(s):  
Frances H. Miller
Keyword(s):  
United States ◽  
Health Care ◽  
Informed Consent ◽  
The United States ◽  
Health Care Rationing ◽  
Legal Obligation ◽  
The United Kingdom ◽  
American Law ◽  
Care Rationing ◽  
Increased Pressure

Health care rationing has gained greater visibility in the United States and the United Kingdom, for quite different reasons. As patients in both countries become more aware that potentially beneficial medical services can be denied them on economic — as opposed to purely medical — grounds, they are beginning to seek help from the judiciary. This Article contends that as rationing becomes more explicit, the doctrine of informed consent will come under increased pressure. The Article suggests that courts and legislatures consider imposing a legal obligation on physicians to inform their patients when potentially effective treatment is to be withheld for economic or other non-clinical reasons.

scholarly journals Building capacity for implementation—the KT Challenge

2021 ◽  
Vol 2 (1) ◽  
Author(s):  
Agnes T. Black ◽  
Marla Steinberg ◽  
Amanda E. Chisholm ◽  
Kristi Coldwell ◽  
Alison M. Hoens ◽  
...  
Keyword(s):  
Health Care ◽  
Patient Care ◽  
Health Care Professionals ◽  
Qualitative Data ◽  
Practice Change ◽  
Evidence Based ◽  
Science Literature ◽  
Health Care Settings ◽  
Improvement Programs ◽  
The Impact

Abstract Background The KT Challenge program supports health care professionals to effectively implement evidence-based practices. Unlike other knowledge translation (KT) programs, this program is grounded in capacity building, focuses on health care professionals (HCPs), and uses a multi-component intervention. This study presents the evaluation of the KT Challenge program to assess the impact on uptake, KT capacity, and practice change. Methods The evaluation used a mixed-methods retrospective pre-post design involving surveys and review of documents such as teams’ final reports. Online surveys collecting both quantitative and qualitative data were deployed at four time points (after both workshops, 6 months into implementation, and at the end of the 2-year funded projects) to measure KT capacity (knowledge, skills, and confidence) and impact on practice change. Qualitative data was analyzed using a general inductive approach and quantitative data was analyzed using non-parametric statistics. Results Participants reported statistically significant increases in knowledge and confidence across both workshops, at the 6-month mark of their projects, and at the end of their projects. In addition, at the 6-month check-in, practitioners reported statistically significant improvements in their ability to implement practice changes. In the first cohort of the program, of the teams who were able to complete their projects, half were able to show demonstrable practice changes. Conclusions The KT Challenge was successful in improving the capacity of HCPs to implement evidence-based practice changes and has begun to show demonstrable improvements in a number of practice areas. The program is relevant to a variety of HCPs working in diverse practice settings and is relatively inexpensive to implement. Like all practice improvement programs in health care settings, a number of challenges emerged stemming from the high turnover of staff and the limited capacity of some practitioners to take on anything beyond direct patient care. Efforts to address these challenges have been added to subsequent cohorts of the program and ongoing evaluation will examine if they are successful. The KT Challenge program has continued to garner great interest among practitioners, even in the midst of dealing with the COVID-19 pandemic, and shows promise for organizations looking for better ways to mobilize knowledge to improve patient care and empower staff. This study contributes to the implementation science literature by providing a description and evaluation of a new model for embedding KT practice skills in health care settings.

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