Dataset Information

Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey.

ABSTRACT:

Objective

Patient-centered clinical trial design and execution is becoming increasingly important. No best practice guidelines exist despite a key stakeholder declaration to create more effective engagement models. This study aims to gain a better understanding of attitudes and practices for engaging patient groups so that actionable recommendations may be developed.

Methods

Individuals from industry, academic institutions, and patient groups were identified through Clinical Trials Transformation Initiative and Drug Information Association rosters and mailing lists. Objectives, practices, and perceived barriers related to engaging patient groups in the planning, conduct, and interpretation of clinical trials were reported in an online survey. Descriptive and inferential statistical analysis of survey data followed a literature review to inform survey questions.

Results

Survey respondents (n = 179) valued the importance of involving patient groups in research; however, patient group respondents valued their contributions to research protocol development, funding acquisition, and interpretation of study results more highly than those contributions were valued by industry and academic respondents (all p < .001). Patient group respondents placed higher value in open communications, clear expectations, and detailed contract execution than did non-patient group respondents (all p < .05). Industry and academic respondents more often cited internal bureaucratic processes and reluctance to share information as engagement barriers than did patient group respondents (all p < .01). Patient groups reported that a lack of transparency and understanding of the benefits of collaboration on the part of industry and academia were greater barriers than did non-patient group respondents (all p< .01).

Conclusions

Despite reported similarities among approaches to engagement by the three stakeholder groups, key differences exist in perceived barriers and benefits to partnering with patient groups among the sectors studied. This recognition could inform the development of best practices for patient-centered clinical trial design and execution. Additional research is needed to define and optimize key success factors.

SUBMITTER: Smith SK

PROVIDER: S-EPMC4605726 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

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Publications

Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey.

Smith Sophia K SK Selig Wendy W Harker Matthew M Roberts Jamie N JN Hesterlee Sharon S Leventhal David D Klein Richard R Patrick-Lake Bray B Abernethy Amy P AP

PloS one 20151014 10

<h4>Objective</h4>Patient-centered clinical trial design and execution is becoming increasingly important. No best practice guidelines exist despite a key stakeholder declaration to create more effective engagement models. This study aims to gain a better understanding of attitudes and practices for engaging patient groups so that actionable recommendations may be developed.<h4>Methods</h4>Individuals from industry, academic institutions, and patient groups were identified through Clinical Trial ...[more]

PMID: 26465328

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Project description:BackgroundPatient engagement strategies can equip patients with tools to navigate treatment decisions and improve patient-centered outcomes. Despite increased recognition about the importance of patient engagement, little is known about the extent of physician practice adoption of patient engagement strategies nationally.MethodsWe analyzed data collected from the National Survey of Healthcare Organizations and Systems (NSHOS) on physician practice adoption of patient engagement strategies. Stratified-cluster sampling was used to select physician practices operating under different organizational structures. Multivariable linear regression models estimated the association of practice ownership, health information technology functionality, use of screening activities, patient responsiveness, chronic care management processes, and the adoption of patient engagement strategies, including shared decision-making, motivational interviewing, and shared medical appointments. All regression models controlled for participation in payment reforms, practice size, Medicaid revenue percentage, and geographic region.ResultsWe found modest and varied adoption of patient engagement strategies by practices of different ownership types, with health system-owned practices having the lowest adoption of ownership types. Practice capabilities, including chronic care management processes, routine screening of medical and social risks, and patient care dissemination strategies were associated with greater practice-level adoption of patient engagement strategies.ConclusionsThis national study is the first to characterize the adoption of patient engagement strategies by US physician practices. We found modest adoption of shared decision-making and motivational interviewing, and low adoption of shared medical appointments. Risk-based payment reform has the potential to motivate greater practice-level patient engagement, but the extent to which it occurs may depend on internal practice capabilities.

Project description:Collaboration between academia and industry is a growing phenomenon within the chemistry community. These sectors have long held strong ties since academia traditionally trains the future scientists of the corporate world, but the recent drastic decrease of public funding is motivating the academic world to seek more private grants. This concept of industrial "sponsoring" is not new, and in the past, some companies granted substantial amounts of money per annum to various academic institutions in exchange for prime access to all their scientific discoveries and inventions. However, academic and industrial interests were not always aligned, and therefore the investment has become increasingly difficult to justify from industry's point of view. With fluctuating macroeconomic factors, this type of unrestricted grant has become more rare and has been largely replaced by smaller and more focused partnerships. In our view, forging a partnership with industry can be a golden opportunity for both parties and can represent a true symbiosis. This type of project-specific collaboration is engendered by industry's desire to access very specific academic expertise that is required for the development of new technologies at the forefront of science. Since financial pressures do not allow companies to spend the time to acquire this expertise and even less to explore fundamental research, partnering with an academic laboratory whose research is related to the problem gives them a viable alternative. From an academic standpoint, it represents the perfect occasion to apply "pure science" research concepts to solve problems that benefit humanity. Moreover, it offers a unique opportunity for students to face challenges from the "real world" at an early stage of their career. Although not every problem in industry can be solved by research developments in academia, we argue that there is significant scientific overlap between these two seemingly disparate groups, thereby presenting an opportunity for a symbiosis. This type of partnership is challenging but can be a win-win situation if both parties agree on some general guidelines, including clearly defined goals and deliverables, biweekly meetings to track research progress, and quarterly or annual meetings to recognize overarching, common objectives. This Account summarizes our personal experience concerning collaborations with various industrial groups and the way it impacted the research programs for both sides in a symbiotic fashion.

Dataset Information

Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey.

Objective

Methods

Results

Conclusions

Publications

Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey.

Similar Datasets

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