When patient advocacy organizations meet industry: a novel approach to dealing with financial conflicts of interest

Ehrlich, Orna; Wingate, Laura; Heller, Caren; Melo‐Martín, Inmaculada de

doi:10.1186/s12910-019-0435-1

Cited by 5 publications

(8 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Thus, increasing the likelihood of translational research leading to enhanced patient care and outcomes. 6 Academic-industry collaborations can leverage industry product development pipelines and academic research expertise and infrastructure, as well as access to target patient populations. This section offers academic physiatrists tips for preparing for, forming, and implementing successful academic-industry collaborations.…”

Section: Steps For Successmentioning

confidence: 99%

“…Hereinafter, further tips for success are outlined for collaboration formation and ongoing operation. [6][7][8][9][10][11] Key steps in the formation of a successful academicindustry collaboration include the following (Fig. 1): ο Negotiations as guided by institutional policy and institutional innovation offices should consider the following (e.g., define boundaries of partnership, determine common goals, define partnership organizational structure of partnership including management and administration, specify milestones and deliverables).…”

Section: Steps For Successmentioning

confidence: 99%

“…Although all the parties share the noble goal of optimizing health outcomes, this relationship is not without fault and risks. 6,10,[14][15][16][17] For the physiatrist, knowledge and understanding of all the factors related to collaborating with industry are vital for success. First, one must understand the problem in need of a solution.…”

Section: Collaborating With Industry-is It For You?mentioning

confidence: 99%

See 2 more Smart Citations

Research and Industry Partnerships in Physiatry

Zafonte

Borg‐Stein²,

Dillingham³

et al. 2021

Am J Phys Med Rehabil

View full text Add to dashboard Cite

The Association of Academic Physiatrists, the home of academic physiatry, is interested in advancing industry partnerships in research among academic physiatrists. There are limited existing resources that outline opportunities for academic physiatrists in engaging the translational research continuum through industry partnerships and the skill sets that academic physiatrists need to successfully navigate these partnerships. In 2019, then President of the Association of Academic Physiatrists, John Chae, MD, ME, assembled a group of interested physician-scientists in physical medicine and rehabilitation to form the Research and Industry Partnerships Task Force to address this problem. The Task Force implemented a live educational session titled “Collaborating with industry” at Physiatry ‘19, the Annual Meeting of the Association of Academic Physiatrists held in Puerto Rico. To extend the reach of this valuable information, the Task Force is creating resources that can be easily distributed and accessed by all physiatrists. The goal of this white paper is to provide a roadmap to help academic physiatrists begin to navigate the field of academia-industry relationships with the ultimate goal of accelerating discovery for the benefit of physiatry and rehabilitation patients.

show abstract

Section: Steps For Successmentioning

confidence: 99%

Section: Steps For Successmentioning

confidence: 99%

Section: Collaborating With Industry-is It For You?mentioning

confidence: 99%

See 1 more Smart Citation

Research and Industry Partnerships in Physiatry

Zafonte

Borg‐Stein²,

Dillingham³

et al. 2021

Am J Phys Med Rehabil

View full text Add to dashboard Cite

show abstract

“…And, more broadly, is it in the public interest for well‐organized and larger advocacy groups to drown out the potentially more urgent needs of smaller, less well‐organized groups? (For a range of such ethical concerns associated with patient advocacy organizations, see, e.g., Kopp et al 2018 or Ehrlich et al 2019. )…”

Section: Insights From Case Studies Exploring Social Media In Negotiamentioning

confidence: 99%

Dealmaking Disrupted: The Unexplored Power of Social Media in Negotiation

Sebenius¹,

Cook²,

Lax³

et al. 2021

Negotiation Journal

View full text Add to dashboard Cite

While social media has had profound effects in many realms, the theory and practice of negotiation have remained relatively untouched by this potent phenomenon. In this article, we survey existing research in this area and develop a broader framework for understanding the wider roles and effects of social media on negotiation. Through a series of detailed case studies, we explore how social media can drive important negotiations either off the rails or toward beneficial outcomes—and how savvy practitioners can harness this often‐neglected factor to their advantage, or else find themselves outmaneuvered by more digitally sophisticated parties. Applying the lens of the “3D negotiation” approach developed by Lax and Sebenius, we describe a number of potentially decisive roles that social media can play to enhance actions by negotiators “at the table,” with respect to deal design, and “away from the table.” In this 3D context, we show how social media can help negotiators learn about their counterparts (interests, perceptions, relationships, and networks), directly and indirectly influence the parties, mobilize supporters, and neutralize potential opponents. We show that being proactive—both in cultivating digital influence or allies and in building resilience to threats across online information ecosystems—can provide critical advantages for negotiators navigating a hyperconnected world. We develop a preliminary framework to help identify the full range of platforms, tools, and methodologies appropriate for the use of social media in negotiations, including network mapping software and open‐source intelligence techniques. Throughout our analysis, we stress the importance of ethical and privacy considerations.

show abstract

“…However, because the direct participation by individual patients is limited, patient organizations or advocates representing patients and their diseases have been cited as important collaborative stakeholders for an effective collaborative process [6,11,12]. Although some have questioned the representativeness of these organizations as not adequately re ecting patient populations due to low patient participation [13][14][15] and nancial con icts of interest with industry entities [16][17][18], the role of patient organizations has expanded to deliver patients' opinions, including basic research and health technology assessment, leveraging the perspectives and expertise of patients experiencing the disease [19][20][21][22][23].…”

Section: Introductionmentioning

confidence: 99%

Trends in collaboration with patient organizations on cancer-related clinical trials: Collaborative relationship with existing stakeholders and the characteristics of their co-sponsored studies in the United States

Lee

Sengoku

2022

Preprint

View full text Add to dashboard Cite

Background In recent years, the importance of patient centricity in drug development has been recognized, affecting the stakeholders conducting clinical trials. In this context, end users, patients and patient organizations are becoming increasingly involved in the development process to address their unmet medical needs. However, there is a lack of research on environmental trends in which patient organizations collaborate with incumbent stakeholders in drug development. This study aimed to understand the current status of clinical trials regarding patient organization involvement as sponsors and collaboration with different types of sponsors in cancer-related clinical trials. This cross-sectional study also examined the characteristics of clinical trials involving patient organizations as new stakeholders by analyzing the environmental factors that promote collaboration with existing stakeholders. Methods A total of 14,830 interventional clinical trials registered on ClinicalTrials.gov between January 1, 2010, and December 31, 2020, were categorized and analyzed by target cancer types and five different sponsor types: 1. patient organization co-sponsored (PO-co), 2. academia (ACD), 3. governmental (GOV), and 4. industry co-sponsored (IND-co) and 5. industry only (IND). Results PO-Co studies accounted for 2% (289 of 14,830) of the total studies, ACD 5%, IND-Co 21%, GOV and IND 36%. When the 289 PO-Co studies were analyzed by cancer type and eligible study population, we found that the proportion of pediatric studies was significantly higher for PO-Co studies (30% (88 of 289)) than for total studies (9% (1,378 of 14,830); P < .001), and we also found that collaboration with PO was more common for certain cancer types compared with the total study. Regarding collaboration with POs, more than half of the PO-GOV collaborative studies were conducted at the Nation cancer center comprehensive cancer centers, and even particular investigators actively engaged in collaboration with POs. Conclusions A cross-sectional analysis of cancer-related clinical trials revealed that the involvement of patient organizations as sponsors in clinical trials did not increase significantly over time. However, some organizations have become actively engaged in certain cancers and pediatric populations that are less prioritized by incumbent sponsors. We also found that governmental sponsors and selected principal investigators played an important role in collaborating with patient organizations. These findings provide a basis for understanding the current status of patient organizations and for considering further contributions.

show abstract

When patient advocacy organizations meet industry: a novel approach to dealing with financial conflicts of interest

Cited by 5 publications

References 28 publications

Research and Industry Partnerships in Physiatry

Research and Industry Partnerships in Physiatry

Dealmaking Disrupted: The Unexplored Power of Social Media in Negotiation

Trends in collaboration with patient organizations on cancer-related clinical trials: Collaborative relationship with existing stakeholders and the characteristics of their co-sponsored studies in the United States

Contact Info

Product

Resources

About