PP27 A Prototype Patient Advocate Decision Aid For Oncology HTA

2018 ◽  
Vol 34 (S1) ◽  
pp. 76-77
Author(s):  
Samuel Thomas ◽  
Silvia Paddock ◽  
Scott Shortenhaus ◽  
Jacqueline Zummo
Keyword(s):  
Decision Aid ◽  
Patient Centered ◽  
Continuous Innovation ◽  
Patient Advocate ◽  
Published Evidence ◽  
Patient Representatives ◽  
Patient Advocates ◽  
Definition Of ◽  
New Treatments ◽  
User Friendly

Introduction:Patient advocates need to process vast amounts of information to accurately and effectively represent heterogeneous patient groups and make meaningful contributions to HTA decisions. Although a wealth of data is available from a variety of sources, it is not often curated in user-friendly ways. Patient representatives have frequently requested tailored resources that allow them to mine the existing literature in preparation for their engagements. Developing such resources constitutes a complex challenge that requires contributions and scrutiny from multiple stakeholders.Methods:We previously developed the Continuous Innovation Indicators™ (CII), an evidence-based tool to assess treatments for twelve solid tumors (freely available at www.scoringprogress.com). The foundation of the CII is a rigorous assessment of published evidence for increased overall survival. Based on feedback from patient advocates, we are expanding the framework to include information on adverse events and other patient-centered outcomes for selected prototype indications.Results:We present a novel, flexible framework that combines evidence of efficacy with published results on other outcomes that matter to patients. Menus and outputs are designed to facilitate dialogue between advocates, clinicians, and HTA professionals. By allowing the user to adjust settings based on known heterogeneity among subpopulations, the tool's output can be used to inform discussions about the value of new interventions for defined patient segments.Conclusions:Patient representatives must frequently identify knowledge gaps in the literature before their HTA engagements and leverage this information to conduct surveys among their constituents. Our new patient advocate decision aid can support this process and facilitate a better understanding of the value of new innovations for diverse subgroups. A better definition of target populations will help to achieve balance between patient access and budget impact of new treatments. We seek feedback on our prototype from all stakeholders to further improve and maximize utility of this tool.

Hospice volunteer as patient advocate: A trait approach

2010 ◽  
Vol 8 (2) ◽  
pp. 159-167 ◽  
Author(s):  
Carol A. Savery ◽  
Nichole Egbert
Keyword(s):  
Locus Of Control ◽  
Patient Advocacy ◽  
Patient Rights ◽  
Patient Centered ◽  
Internal Locus ◽  
Internal Locus Of Control ◽  
Patient Advocate ◽  
Hospice Volunteers ◽  
Patient Advocates ◽  
Additional Support

AbstractObjective:The purpose of this study is to examine traits of hospice volunteers that facilitate their success in this informal caregiving role, with the larger goal of alleviating the family caregiver burden and providing additional support to the hospice patient. To achieve this goal, a new scale was developed to tap into how hospice volunteers view their patient advocacy role.Method:Participants were 136 trained hospice volunteers from the Midwest who had direct contact with hospice patients. Volunteers mailed anonymous surveys that included measures of argumentativeness, locus of control, attitudes toward patient advocacy, and key demographic items. A new scale was developed to measure patient advocacy by hospice volunteers called the Hospice Volunteer as Patient Advocate.Results:Submitting this scale to exploratory factor analysis, two factors emerged: duty as patient advocate and support of patient rights. After performing a multiple regression analysis, results showed that female volunteers who were high in internal locus of control were more likely to perceive that volunteers have a duty as patient advocates. Younger volunteers with more years of volunteer experience, higher levels of internal locus of control, and lower external locus of control were more likely to support patient rights.Significance of results:The findings of this study could be used to formalize hospice volunteers' role as patient advocates, thus better utilizing them as committed, caring communicators and improving patient-centered care at end-of-life.

scholarly journals Current Evidence and Future Perspectives on the Effective Practice of Patient-Centered Laboratory Medicine

2015 ◽  
Vol 61 (4) ◽  
pp. 589-599 ◽  
Author(s):  
Mike J Hallworth ◽  
Paul L Epner ◽  
Christoph Ebert ◽  
Corinne R Fantz ◽  
Sherry A Faye ◽  
...  
Keyword(s):  
Patient Outcomes ◽  
Clinical Effectiveness ◽  
Laboratory Medicine ◽  
Current Evidence ◽  
Patient Centered ◽  
Definition Of ◽  
Current Utilization ◽  
Measures Of Effectiveness ◽  
The Impact ◽  
Primary Measure

AbstractBACKGROUNDSystematic evidence of the contribution made by laboratory medicine to patient outcomes and the overall process of healthcare is difficult to find. An understanding of the value of laboratory medicine, how it can be determined, and the various factors that influence it is vital to ensuring that the service is provided and used optimally.CONTENTThis review summarizes existing evidence supporting the impact of laboratory medicine in healthcare and indicates the gaps in our understanding. It also identifies deficiencies in current utilization, suggests potential solutions, and offers a vision of a future in which laboratory medicine is used optimally to support patient care.SUMMARYTo maximize the value of laboratory medicine, work is required in 5 areas: (a) improved utilization of existing and new tests; (b) definition of new roles for laboratory professionals that are focused on optimizing patient outcomes by adding value at all points of the diagnostic brain-to-brain cycle; (c) development of standardized protocols for prospective patient-centered studies of biomarker clinical effectiveness or extraanalytical process effectiveness; (d) benchmarking of existing and new tests in specified situations with commonly accepted measures of effectiveness; (e) agreed definition and validation of effectiveness measures and use of checklists for articles submitted for publication. Progress in these areas is essential if we are to demonstrate and enhance the value of laboratory medicine and prevent valuable information being lost in meaningless data. This requires effective collaboration with clinicians, and a determination to accept patient outcome and patient experience as the primary measure of laboratory effectiveness.

scholarly journals Rare Treatments for Rare Dyslipidemias: New Perspectives in the Treatment of Homozygous Familial Hypercholesterolemia (HoFH) and Familial Chylomicronemia Syndrome (FCS)

2021 ◽  
Vol 23 (11) ◽  
Author(s):  
Laura D’Erasmo ◽  
Simone Bini ◽  
Marcello Arca
Keyword(s):  
Familial Hypercholesterolemia ◽  
Treatment Options ◽  
New Drugs ◽  
Lipid Lowering ◽  
Homozygous Familial Hypercholesterolemia ◽  
Published Evidence ◽  
Novel Drugs ◽  
Life Threatening ◽  
History Of ◽  
Definition Of

Abstract Purpose of Review This review aims to summarize the most recent published literature concerning lomitapide and volanesorsen that are approved for the use in HoFH and FCS patients, respectively. Moreover, it will briefly revise the published evidence on novel, non-approved treatments that are under evaluation for the management of these rare forms of dyslipidemias Recent Findings The definition of rare dyslipidemias identifies a large number of severe disorders of lipid metabolism of genetic origin. Among them were homozygous familial hypercholesterolemia (HoFH) (OMIM #143890) and familial chylomicronemia syndrome (FCS) (OMIM #238600), which are characterized by a markedly impaired cholesterol- and triglyceride-containing lipoproteins metabolism. They are being particularly associated with poor health outcomes and quality of life. Considering the severity of these diseases, common lipid-lowering drugs are often ineffective or do not allow to achieve the recommended lipid targets to prevent the development of complications. Nowadays, several new drugs have been found to effectively treat HoFH and FCS with an acceptable safety profile. Summary Treating patients with HoFH and FCS remains very challenging. However, novel treatment options are emerging and might be considered in addition to conventional therapy for managing these diseases. These novel drugs will possibly change the natural history of these two rare and life-threatening diseases.

scholarly journals Fair, just and compassionate: A pilot for making allocation decisions for patients requesting experimental drugs outside of clinical trials

2018 ◽  
Vol 44 (11) ◽  
pp. 761-767 ◽  
Author(s):  
Arthur L Caplan ◽  
J Russell Teagarden ◽  
Lisa Kearns ◽  
Alison S Bateman-House ◽  
Edith Mitchell ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Healthcare Providers ◽  
Best Interests ◽  
Ethical Framework ◽  
Compassionate Use ◽  
Medical Needs ◽  
Experimental Drugs ◽  
The Status ◽  
Patient Representatives ◽  
New Treatments

Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet platforms enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee (CompAC). Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice.

scholarly journals Social exclusion in primary healthcare settings: the time for measurement has come

2019 ◽  
Vol 29 (1) ◽  
pp. 10-13
Author(s):  
Patrick O’Donnell ◽  
Khalifa Elmusharaf
Keyword(s):  
Social Exclusion ◽  
Primary Healthcare ◽  
Knowledge Network ◽  
Individual Level ◽  
Healthcare Settings ◽  
Published Evidence ◽  
Measurement Tools ◽  
Definition Of ◽  
The Individual

Social exclusion is a concept that has been discussed and debated in many disciplines in recent decades. In 2006 the WHO Social Exclusion Knowledge Network published a report detailing their work explaining the relevance of social exclusion to the domain of health. As part of that work, the authors formulated a complex definition of social exclusion that has proven difficult to adapt or operationalize in healthcare settings. We looked at this WHO work, and at other published evidence, and decided that social exclusion is a concept that is worth measuring at the individual level in healthcare settings. We suggest that the primary healthcare space, in particular, is an ideal setting in which to do that measurement. We have examined existing social exclusion measurement tools, and scrutinised the approaches taken by their authors, and the various domains they measured. We now propose to develop and validate such a tool for use in primary healthcare settings.

Racial differences in veterans’ response to a standard vs. patient-centered decision aid for prostate cancer: Implications for decision making in African American and White men

2020 ◽  
Vol 103 (12) ◽  
pp. 2460-2467
Author(s):  
Aisha T. Langford ◽  
Laura D. Scherer ◽  
Peter A. Ubel ◽  
Margaret Holmes-Rovner ◽  
Karen A. Scherr ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
African American ◽  
Racial Differences ◽  
Decision Aid ◽  
White Men ◽  
Patient Centered

Legislating for advocacy: The case of whistleblowing

2015 ◽  
Vol 24 (3) ◽  
pp. 305-312 ◽  
Author(s):  
Chanel L Watson ◽  
Tom O’Connor
Keyword(s):  
United Kingdom ◽  
Patient Advocate ◽  
The United Kingdom ◽  
Patient Advocates ◽  
The Subject

Background: The role of nurses as patient advocates is one which is well recognised, supported and the subject of a broad body of literature. One of the key impediments to the role of the nurse as patient advocate is the lack of support and legislative frameworks. Within a broad range of activities constituting advocacy, whistleblowing is currently the subject of much discussion in the light of the Mid Staffordshire inquiry in the United Kingdom (UK) and other instances of patient mistreatment. As a result steps to amend existing whistleblowing legislation where it exists or introduce it where it does not are underway. Objective: This paper traces the development of legislation for advocacy. Conclusion: The authors argue that while any legislation supporting advocacy is welcome, legislation on its own will not encourage or enable nurses to whistleblow.

A Multisite Randomized Controlled Trial of a Patient-Centered Ventricular Assist Device Decision Aid (VADDA Trial)

2018 ◽  
Vol 24 (10) ◽  
pp. 661-671 ◽  
Author(s):  
Kristin M. Kostick ◽  
Courtenay R. Bruce ◽  
Charles G. Minard ◽  
Robert J. Volk ◽  
Andrew Civitello ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Ventricular Assist Device ◽  
Decision Aid ◽  
Controlled Trial ◽  
Patient Centered ◽  
Assist Device ◽  
Ventricular Assist ◽  
Randomized Controlled

Abstract C03: Development of a patient-centered decision aid to improve accuracy of breast cancer risk perception

2013 ◽  
Author(s):  
Tong Xiao ◽  
Katherine D. Crew ◽  
Parijatham S. Sivasubramanian ◽  
Alejandra N. Aguirre ◽  
Cindy K. Smalletz ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Risk Perception ◽  
Breast Cancer Risk ◽  
Cancer Risk ◽  
Decision Aid ◽  
Patient Centered ◽  
Cancer Risk Perception ◽  
Improve Accuracy

From Patient to Agent

2016 ◽  
Author(s):  
Mark Sullivan MD, PhD
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Patient Autonomy ◽  
Clinical Problem ◽  
Patient Centered ◽  
Objective Health ◽  
Centered Care ◽  
Primary Means ◽  
Definition Of Health ◽  
Definition Of

In the 21st century, the primary challenge for health care is chronic illness. To meet this challenge, we need to think anew about the role of the patient in health and health care. There have been widespread calls for patient-centered care, but this model of care does not question deeply enough the goals of health care, the nature of the clinical problem, and the definition of health itself. We must instead pursue patient-centered health, which is a health perceived and produced by patients. We should not only respect, but promote patient autonomy as an essential component of this health. Objective health measures cannot capture the burden of chronic illness, so we need to draw on the patient's perspective to help define the clinical problem. We require a new definition of health as the capacity for meaningful action. It is recognized that patients play a central role in chronic illness care, but the concept of health behavior retards innovation. We seek not just an activated patient, but an autonomous patient who sets and pursues her own vital goals. To fully enlist patients, we must bridge the gap between impersonal disease processes and personal processes. This requires understanding how the roots of patient autonomy lie in the biological autonomy that allows organisms to carve their biological niche. It is time for us to recognize the patient as the primary customer for health care and the primary producer of health. Patient agency is both the primary means and primary end of health care.

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