Making Patient Engagement a Reality

Pushparajah, Daphnee S.

doi:10.1007/s40271-017-0264-6

Cited by 52 publications

(65 citation statements)

References 9 publications

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“…Qualitative methods are mostly suggested for gathering information about experiences, attitudes and perceptions. We agree with others that there is a need for new evaluation methods and tools that focus on observable impact on the research process and benefits for those involved . Some argue for broadly applicable, quantitative methods whilst others contend that more subjective, qualitative methods are necessary to capture the nuances of outcomes and impacts of patient engagement .…”

Section: Discussionmentioning

confidence: 82%

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat

Finlay

Schuitmaker-Warnaar

et al. 2019

Health Expectations

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Background Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. Objective Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. Search strategy and inclusion criteria We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. Data extraction and synthesis Data were extracted from 91 publications, coded and thematically analysed. Main results A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. Discussion and conclusions Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.

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Section: Discussionmentioning

confidence: 82%

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat

Finlay

Schuitmaker-Warnaar

et al. 2019

Health Expectations

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“…There is a growing consensus across stakeholder groups of the importance of patient engagement (PE) in medicines development, and during the life cycle of a product (“medicines life cycle”). There are an increasing number of efforts to achieve this . PE in the research and development setting especially has received much focus with the development of frameworks or guidance .…”

Section: Introductionmentioning

confidence: 99%

What do stakeholders expect from patient engagement: Are these expectations being met?

Boudes

Robinson

Bertelsen³

et al. 2018

Health Expectations

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BackgroundMeaningful patient engagement (PE) in medicines development and during the life cycle of a product requires all stakeholders have a clear understanding of respective expectations.ObjectiveA qualitative survey was undertaken to understand stakeholder expectations.DesignThe survey explored 4 themes from the perspective of each stakeholder group: meaning, views, expectations and priorities for PE. Participants were grouped into 7 categories: policymakers/regulators; health‐care professionals (HCPs); research funders; payers/purchasers/HTA; patients/patient representatives; pharmaceutical/life sciences industry; and academic researchers.ResultsFifty‐nine interviews were conducted across a range of geographies, PE experience and job seniority/role. There was consensus across stakeholders on meaning of PE; importance of promoting PE to a higher level than currently; need for a more structured process and guidance. There was little consensus on stakeholder expectations and roles. Policymakers/regulators were expected by others to drive PE, create a framework and facilitate PE, provide guidelines of good practice and connect stakeholders, but this expectation was not shared by the policymakers/regulators group. HCPs were seen as the link between patients and other stakeholders, but HCPs did not necessarily share this view.Discussion and conclusionsDespite broad stakeholder categories, clear themes emerged: there is no “leader”; no stakeholder has a clear view on how to meaningfully engage with patients; there are educational gaps; and a structure and guidance for PE is urgently required. Given the diversity of stakeholders, there needs to be multistakeholder collaborative leadership. Effective collaboration requires consensus on roles, responsibilities and expectations to synergize efforts to deliver meaningful PE in medicines life cycle.

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“…According to researchers it is important to "validate any insight through a variety of other means, such as database analyses or market research." 6 According to the article titled: "How Patient Advocacy Helps Advance Cancer Research: A Conversation on Collaboration" published by ASCO, one of the recommendations to effectively serve as a patient advocate in the research eld is to "remain grounded in the patient communities." As a research advocate, "this means working with newly diagnosed patients, attending support groups, and keeping in touch with how today's patients experience medical care and treatment."…”

Section: Gaps and Opportunities In Research Advocacy Trainingmentioning

confidence: 99%

Understanding the perceived impact and value of research advocacy initiatives for colorectal cancer

Garcia

Dwyer

Worrall

et al. 2020

Preprint

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Background Research advocacy utilizes patient insight to progress research, ensuring that patient values remain a priority. It is integral to inform activities such as designing clinical trials, providing perspectives on Institutional Review Boards (IRB’s), and reviewing research grants. As a leader in colorectal cancer (CRC) advocacy, Fight Colorectal Cancer (Fight CRC) developed a formal research advocacy training program in 2015 with the goal of preparing CRC advocates to become the most educated patient voice at the research table. Methods To understand the effectiveness of a research advocacy training program and subsequently research advocacy as a whole, Fight CRC distributed online questionnaires between December 2018 and July 2019 to oncology professionals who had previously worked with Fight CRC research advocates, including physicians, program directors, and consumer review administrators. A questionnaire was also disseminated to Fight CRC research advocates. Results In total, twenty-six stakeholders participated and 89% agreed/strongly agreed that there was value in having the patient voice in research. Respondents reported that advocates provide a perspective that would not otherwise be considered in the research process. Fourteen research advocates participated in the survey and the majority indicated that the research advocacy program equipped them to sit on panels and provide effective insight. All research advocates believed that their patient insight is taken seriously by the research community. Conclusion In order for research advocacy to have a significant impact and a high perceived value on research, it is important to establish an effective training program to support adult learning. In addition, it is necessary for researchers to understand how advocates can positively influence their work, and how the scientific community can engage with and leverage research advocacy to its fullest potential to improve scientific research, delivery of care, and quality of life for patients with cancer.

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Making Patient Engagement a Reality

Cited by 52 publications

References 9 publications

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

What do stakeholders expect from patient engagement: Are these expectations being met?

Understanding the perceived impact and value of research advocacy initiatives for colorectal cancer

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