A Roadmap to Patient Engagement: FSHD and the ReSolve Clinical Trial

2021 ◽  
pp. 10.1212/CPJ.0000000000001074
Author(s):  
Samantha LoRusso ◽  
Katy Eichinger ◽  
Kiley Higgs ◽  
Leann Lewis ◽  
Michaela Walker ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Advisory Committee ◽  
Patient Engagement ◽  
Patient Involvement ◽  
Neurological Diseases ◽  
Facioscapulohumeral Muscular Dystrophy ◽  
Advocacy Groups ◽  
Patient Feedback ◽  
Protocol Development ◽  
Patient Advocacy Groups

AbstractWe describe our efforts to overcome barriers to patient engagement in facioscapulohumeral muscular dystrophy (FSHD), and offer a roadmap that can be replicated in other rare neurological disorders. We implemented an engagement plan during Clinical Trial Readiness to Solve Barriers to Drug Development for FSHD (ReSolve), an 18-month, multi-site, observational study of individuals with FSHD. Elements of our engagement plan included conducting focus groups during protocol development, patient involvement on the ReSolve external advisory committee, creation of a patient advisory committee, and collaboration with patient advocacy groups. Patient feedback led to adaptations in the study protocol and to changes in recruitment and retention methods. Patient engagement ensures the patient voice contributes to multiple aspects of trial design and implementation. Our engagement efforts exemplify how collaboration with patients and families can be accomplished in FSHD and the resultant roadmap process may be replicable in other rare neurological diseases.

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]

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.

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 Access to patient oriented information—a baseline Endo-ERN survey among patients with rare endocrine disorders

Endocrine ◽  
2021 ◽  
Vol 71 (3) ◽  
pp. 542-548
Author(s):  
Violeta Iotova ◽  
Camilla Schalin-Jäntti ◽  
Petra Bruegmann ◽  
Manuela Broesamle ◽  
Johan De Graaf ◽  
...  
Keyword(s):  
Mother Tongue ◽  
Information Access ◽  
Baseline Survey ◽  
Endocrine Disorders ◽  
Age Difference ◽  
Specific Information ◽  
Advocacy Groups ◽  
Educational Materials ◽  
Reference Centre ◽  
Patient Advocacy Groups

Abstract Aim To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe. Methods Electronic invitation to participate in a survey (19 questions) was sent to 120 patient advocacy groups (PAGs), and further distributed to 32 European countries. Results A total of 1138 respondents from 22 countries (74% women), aged between 1 year (parents) and 70 years, participated. The Netherlands, France, Germany, Italy and France had highest participation rates. All Main Thematic Groups (MTGs) were represented; the adrenal (32%), pituitary (26%) and thyroid (22%) were the most common. The majority of the respondents got information from their endocrinologist (75%), PAGs (37%) and expert reference centre (22%); 95% received information in their mother tongue. Leaflets (70%), infographics (65%), webinars (60%) and Internet films (55%) were preferred ways of learning. Respondents relied mostly on materials by PAGs and alliances (79%), rather than from specific international RD sites (15%). Fifty-six percent used Facebook, and 37% other social media, with a significant age difference (<40/>40 years) among non-users, 19% vs. 36%, p < 0.0001. Of all, 685 answered questions on informational materials for children−79% wanted materials that can be used by the children themselves. There was significant age difference (<40 years/>40 years) in the willingness to help create new educational materials; 49% vs. 34%, p < 0.001. Conclusions Our current patient information access survey provides a sound basis for further planning and execution of educational and teaching activities by Endo-ERN.

scholarly journals Managing Patient Engagement in the Process Approach

2020 ◽  
pp. 1-12
Author(s):  
Małgorzata DYMYT ◽  
Marta WINCEWICZ-BOSY
Keyword(s):  
Decision Making ◽  
Health Services ◽  
Healthcare System ◽  
Patient Engagement ◽  
Patient Involvement ◽  
Process Approach ◽  
Wide Area ◽  
Organizational Levels ◽  
Care Decision

The main goal of the article is to identify the essence, role, premises and conditions of managing patient engagement in the process approach. Patient engagement is an important component of health services, covering a wide area of action at the systemic and organizational levels. A comprehensive and coherent approach to the processes related to patient involvement, especially in the area of care decision-making, is essential for the smooth functioning of the healthcare system.

scholarly journals Patient Engagement Approaches in Total Joint Arthroplasty: A Review of Two Decades

2021 ◽  
Vol 8 ◽  
pp. 237437352110365
Author(s):  
Aaron Alokozai ◽  
David N. Bernstein ◽  
Linsen T. Samuel ◽  
Atul F. Kamath
Keyword(s):  
Decision Making ◽  
Patient Engagement ◽  
Total Joint Arthroplasty ◽  
Remote Monitoring ◽  
Patient Involvement ◽  
Care Delivery ◽  
Joint Arthroplasty ◽  
Virtual Rehabilitation ◽  
The Past ◽  
Future Work

Patient engagement is a comprehensive approach to health care where the physician inspires confidence in the patient to be involved in their own care. Most research studies of patient engagement in total joint arthroplasty (TJA) have come in the past 5 years (2015-2020), with no reviews investigating the different patient engagement methods in TJA. The primary purpose of this review is to examine patient engagement methods in TJA. The search identified 31 studies aimed at patient engagement methods in TJA. Based on our review, the conclusions therein strongly suggest that patient engagement methods in TJA demonstrate benefits throughout care delivery through tools focused on promoting involvement in decision making and accessible care delivery (eg, virtual rehabilitation, remote monitoring). Future work should understand the influence of social determinants on patient involvement in care, and overall cost (or savings) of engagement methods to patients and society.

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
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