scholarly journals NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan

2021 ◽  
Vol 19 (12) ◽  
pp. 1395-1400
Author(s):  
Kara Martin ◽  
Alyssa A. Schatz ◽  
Jan S. White ◽  
Hyman Muss ◽  
Aarati Didwania ◽  
...  
Keyword(s):  
Care Delivery ◽  
Patient Advocacy ◽  
Virtual Patient ◽  
Patient Needs ◽  
Advocacy Groups ◽  
Advocacy Organizations ◽  
Keynote Presentation ◽  
Patients With Cancer ◽  
Explicit Bias ◽  
Patient Advocacy Groups

Patients with cancer have widely divergent experiences throughout their care from screening through survivorship. Differences in care delivery and outcomes may be due to varying patient preferences, patient needs according to stage of life, access to care, and implicit or explicit bias in care according to patient age. NCCN convened a series of stakeholder meetings with patients, caregivers, and patient advocacy groups to discuss the complex challenges and robust opportunities in this space. These meetings informed the NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan held on December 10, 2020, which featured a keynote presentation, multidisciplinary panels, and presentations from patient advocacy organizations. This article encapsulates and expounds upon the findings from the stakeholder meetings and discussions during the summit.

Patient support and advocacy

2016 ◽  
Author(s):  
Seoirse Smith ◽  
Laurie M. Savage
Keyword(s):  
Support Groups ◽  
Axial Spondyloarthritis ◽  
Treatment Options ◽  
Patient Advocacy ◽  
International Federation ◽  
Medical Community ◽  
Advocacy Groups ◽  
Patient Support ◽  
Advocacy Organizations ◽  
Patient Advocacy Groups

Patient advocacy groups grew out of a need to provide support to and education for patients and to fuel research to better understand diseases and their diagnosis, and treatment options for patients. These organizations have become integral partners with the medical community in developing healthcare policy, patient education, patient support, and scientific research. The Ankylosing Spondylitis International Federation (ASIF) of patient advocacy and support groups and the Spondylitis Association of America (SAA) are two of the leading patient advocacy organizations for millions of people affected by axial spondyloarthritis, increasing awareness of the disease, disseminating knowledge, sponsoring research, and influencing public policy.

scholarly journals Barriers to accrual and enrollment in brain tumor trials.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 2024-2024 ◽  
Author(s):  
Eudocia Quant Lee ◽  
Ugonma Nnenna Chukwueke ◽  
Shawn L. Hervey-Jumper ◽  
John Frederick De Groot ◽  
Jose Pablo Leone ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Response Assessment ◽  
Patient Advocacy ◽  
Cooperative Groups ◽  
Advocacy Groups ◽  
Oncology Patient ◽  
Clinical Trial Accrual ◽  
Multi Stakeholder ◽  
Patient Advocacy Groups ◽  
Major Impediment

2024 Background: A major impediment to improving neuro-oncology outcomes is poor clinical trial accrual. Methods: We convened a multi-stakeholder group including Society for Neuro-Oncology, Response Assessment in Neuro-Oncology, patient advocacy groups, clinical trial cooperative groups, and other partners to determine how we can improve trial accrual. Results: We describe selected factors contributing to poor trial accrual and possible solutions. Conclusions: We will implement strategies with the intent to double trial accrual over the next 5 years. [Table: see text]

scholarly journals The importance of transplant program measures: Surveys of three national patient advocacy groups

2018 ◽  
Vol 32 (12) ◽  
pp. e13426 ◽  
Author(s):  
Cory R. Schaffhausen ◽  
Marilyn J. Bruin ◽  
Sauman Chu ◽  
Andrew Wey ◽  
Jon J. Snyder ◽  
...  
Keyword(s):  
Patient Advocacy ◽  
Advocacy Groups ◽  
Transplant Program ◽  
National Patient ◽  
Patient Advocacy Groups

What does meaningful look like? A qualitative study of patient engagement at the Pan-Canadian Oncology Drug Review: perspectives of reviewers and payers

2018 ◽  
Vol 23 (2) ◽  
pp. 72-79 ◽  
Author(s):  
Linda Rozmovits ◽  
Helen Mai ◽  
Alexandra Chambers ◽  
Kelvin Chan
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Patient Advocacy ◽  
Health Technology ◽  
Assessment Process ◽  
Advocacy Groups ◽  
Oncology Drug ◽  
Patient Advocacy Groups ◽  
Drug Review

Objectives While there is wide support for patient engagement in health technology assessment, determining what constitutes meaningful (as opposed to tokenistic) engagement is complex. This paper explores reviewer and payer perceptions of what constitutes meaningful patient engagement in the Pan-Canadian Oncology Drug Review process. Methods Qualitative interview study comprising 24 semi-structured telephone interviews. A qualitative descriptive approach, employing the technique of constant comparison, was used to produce a thematic analysis. Results Submissions from patient advocacy groups were seen as meaningful when they provided information unavailable from other sources. This included information not collected in clinical trials, information relevant to clinical trade-offs and information about aspects of lived experience such as geographic differences and patient and carer priorities. In contrast, patient submissions that relied on emotional appeals or lacked transparency about their own methods were seen as detracting from the meaningfulness of patient engagement by conflating health technology assessment with other functions of patient advocacy groups such as fundraising or public awareness campaigns, and by failing to provide credible information relevant to deliberations. Conclusions This study suggests that misalignment of stakeholder expectations remains an issue even for a well-regarded health technology assessment process that has promoted patient engagement since its inception. Support for the technical capacity of patient groups to participate in health technology assessment is necessary but not sufficient to address this issue fully. There is a fundamental tension between the evidence-based nature of health technology assessment and the experientially oriented culture of patient advocacy. Divergent notions of what constitutes evidence and how it should be used must also be addressed.

Scientific contributions of ankylosing spondylitis patient advocacy groups

2000 ◽  
Vol 12 (4) ◽  
pp. 239-247 ◽  
Author(s):  
Ernst Feldtkeller ◽  
Jane Bruckel ◽  
Muhammad Asim Khan
Keyword(s):  
Ankylosing Spondylitis ◽  
Patient Advocacy ◽  
Advocacy Groups ◽  
Patient Advocacy Groups
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