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

Vat, Lidewij Eva; Finlay, Teresa; Schuitmaker-Warnaar, Tjerk Jan; Fahy, Nick; Robinson, Paul; Boudes, Mathieu; Diaz, Ana; Ferrer, Elisa; Hivert, Virginie; Purman, Gabor; Kürzinger, Marie Laure; Kroes, Robert A.; Hey, Claudia; Broerse, Jacqueline E. W.

doi:10.1111/hex.12951

Cited by 82 publications

(106 citation statements)

References 73 publications

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“…Though this was considered as important by patients and researchers, personal benefits such as increased confidence, less social isolation, new use of existing skills should not be overlooked, as well as negative impacts on peoples' lives such as stress, feeling overwhelmed etc. [10,41] We created a comprehensive survey that reflects local needs, while respecting scientific rigour which we see as a strength. Using quantitative methods allowed us to easily collect information from participants with the opportunity to compare responses across groups, while complementing the data with more qualitative in-depth information about participants' experiences.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

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Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

et al. 2020

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Background: Efforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health research projects in Newfoundland and Labrador, Canada, and 2) learn more about how to best monitor and evaluate patient engagement. This paper presents the results of our participatory evaluation study and the lessons learned. The evaluation of the projects was driven by questions patients wanted answered. Methods: We conducted a formative evaluation of patient engagement in health research projects. Projects spanned a variety of topics, target groups, research designs and methods of patient engagement. Participants included principal investigators (n = 6) and their patient partners (n = 14). Furthermore, graduate students (n = 13) working on their own research projects participated. Participants completed an online survey with closed and open-ended questions about their patient engagement efforts, experiences and preliminary outcomes. Patients were involved as co-investigators in the entire evaluation study. We used qualitative methods to evaluate our participatory process. Results: The evaluation study results show that most patients and researchers felt prepared and worked together in various phases of the research process. Both groups felt that the insights and comments of patients influenced research decisions. They believed that patient engagement improved the quality and uptake of research. Students felt less prepared and were less satisfied with their patient engagement experience compared to researchers and their patient partners. Involvement of patient co-investigators in this evaluation resulted in learnings, transparency, validation of findings and increased applicability. Challenges were to select evaluation questions relevant to all stakeholders and to adapt evaluation tools to local needs.

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Section: Strengths and Limitationsmentioning

confidence: 99%

“…Patient engagement is reported to improve the quality and outcomes of research, and studies show that patient engagement can impact various stages of the research cycle [8][9][10][11][12]. However, evaluation of patient engagement in health research remains limited.…”

Section: Introductionmentioning

confidence: 99%

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

et al. 2020

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“…Our evaluation framework development process will be supported by international evidence based on systematic reviews of evaluation frameworks for patient and public engagement in research [ 9 , 11 , 12 , 15 , 18 ], a systematic review of existing evaluation instruments [ 8 ], evaluation principles for evaluating patient and public engagement in research [ 8 ], and a systematic review of patient and public engagement outcome indicators and evaluation methods [ 32 ]. This preparation work will be used to produce background evidence documents for expert working group members, to develop Delphi questionnaires and prepare consensus meeting participants.…”

Section: Methodsmentioning

confidence: 99%

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol

et al. 2021

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Background Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Objective This project aims to build a national adaptable framework for the evaluation of PPE in research, by: Building consensus on common evaluation criteria and indicators for PPE in research; Defining recommendations to implement and adapt the framework to specific populations. Methods Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. Discussion The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

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“…Internationally, the PARADIGM consortium is currently investigating the return on investment of patient involvement initiatives and metrics for quantitative and qualitative assessment. The initial publications from this consortium suggest a key role for education and empowerment in evaluating benefits and costs (15).…”

Section: Dutch Eupati Course Adds Value To Medicines R and D Ecosystemmentioning

confidence: 99%

The Launch of the European Patients' Academy on Therapeutic Innovation in the Netherlands: A Qualitative Multi-Stakeholder Analysis

Rensen¹,

Voogdt-Pruis

Vroonland³

2020

Front. Med.

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Background: Involving patients' representatives in the research and development of medicinal products (medicines R&D) leads to better medical treatment. In 2014, the European Patients' Academy on Therapeutic Innovation (EUPATI) was started with the goal of increasing the capacity and capabilities of patient representatives in this field. To make this academy more accessible and applicable for the Netherlands, a Dutch version was launched in September 2019. To explore the options for a durable infrastructure for organizing the Dutch EUPATI course, a multi-stakeholder qualitative study was done. The views of various stakeholders from pharmaceutical industry, governmental organizations, patient organizations, and the academic world were examined about the benefits and challenges of this course for patient involvement in medicines R&D. Methods: From April to June 2019, 10 semi-structured interviews were completed, each with two representatives of all stakeholders involved. In addition, individual Dutch graduates of the European EUPATI (EUPATI fellows) were consulted via an e-mail questionnaire. Using a directed content analysis based on the Business Canvas Model, the transcribed interviews were coded, analyzed, and final attributes consolidated. Results: The semi-structured interviews and completed questionnaires explored how the stakeholders are aiming to assist patient involvement in medicines R&D through the Dutch EUPATI course. The building blocks of the Business Canvas Model were described with concrete attributes for making the business case. Stakeholders stated that the Dutch EUPATI course was an incentive for patient involvement in medicines development, for patient-oriented research and outcomes, for the availability of patient representatives (expert ones in particular), and for the content and representation quality of patient representatives. The key values for collaborating in the network as mentioned by the stakeholders were neutrality, patients' interests, equality, independence, shared objectives, long-term commitment, transparency, understanding, trust, and respect. Conclusions: Patient involvement in medicines R&D is evolving and the demand for qualified patient representatives is growing. Dutch stakeholders confirmed the added value of the patients' academy and expressed their willingness to contribute. Important values and conditions for long term collaboration were formulated.

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

Cited by 82 publications

References 73 publications

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol

The Launch of the European Patients' Academy on Therapeutic Innovation in the Netherlands: A Qualitative Multi-Stakeholder Analysis

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