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 INNV-33. BARRIERS TO ACCRUAL AND ENROLLMENT IN BRAIN TUMOR TRIALS

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi137-vi137
Author(s):  
Eudocia Lee ◽  
Ugonma Chukwueke ◽  
Shawn Hervey-Jumper ◽  
John DeGroot ◽  
Pablo Leone ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Organizational Factors ◽  
Response Assessment ◽  
Cooperative Groups ◽  
Advocacy Groups ◽  
Oncology Patient ◽  
Community Factors ◽  
Clinical Trial Accrual ◽  
Multi Stakeholder ◽  
Patient Advocacy Groups

Abstract 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 described selected factors contributing to poor trial accrual and possible solutions. We focused on patient and community factors, disparities, physician and provider factors, clinical trial factors, and site and organizational factors CONCLUSIONS We will implement strategies with the intent to double accrual to neuro-oncology trials over the next 5 years.

scholarly journals Barriers to accrual and enrollment in brain tumor trials

2019 ◽  
Author(s):  
Eudocia Q Lee ◽  
Ugonma N Chukwueke ◽  
Shawn L Hervey-Jumper ◽  
John F de Groot ◽  
Jose Pablo Leone ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Brain Tumor ◽  
Response Assessment ◽  
Adult Brain ◽  
Cooperative Groups ◽  
Tumor Patients ◽  
Cancer Society ◽  
Clinical Trial Accrual ◽  
Patient Advocacy Groups

Abstract Many factors contribute to the poor survival of malignant brain tumor patients, some of which are not easily remedied. However, one contributor to the lack of progress that may be modifiable is poor clinical trial accrual. Surveys of brain tumor patients and neuro-oncology providers suggest that clinicians do a poor job of discussing clinical trials with patients and referring patients for clinical trials. Yet, data from the Cancer Action Network of the American Cancer Society suggest that most eligible oncology patients asked to enroll on a clinical trial will agree to do so. To this end, the Society for Neuro-Oncology (SNO) in collaboration with the Response Assessment in Neuro-Oncology (RANO) Working Group, patient advocacy groups, clinical trial cooperative groups, including the Adult Brain Tumor Consortium (ABTC), and other partners are working together with the intent to double clinical trial accrual over the next 5 years. Here we describe the factors contributing to poor clinical trial accrual in neuro-oncology and offer possible solutions.

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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