Improving Patient Involvement in the Lifecycle of Medicines: Insights From the EUPATI BE Survey

Grine, Lynda; Janssens, Rik; Overbeeke, Eline van; Derijcke, Danielle; Silva, Mitchell; Delys, Belinda; Dusart, Isabelle; Aertsen, Veerle; Wilmars, Magali Mertens de; Robaczewska, Joanna; Stevens, Hilde

doi:10.3389/fmed.2020.00036

Cited by 4 publications

(4 citation statements)

References 7 publications

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“…Another strength is the use of patient-reported outcome measures as these are believed to complement physician-rated outcomes in the sense of coming closer to patients' preferred levels of involvement [43,44]. It is essential to acknowledge certain limitations that may impact the generalizability and interpretability of the findings.…”

Section: Discussionmentioning

confidence: 99%

Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study

Sagen,

Kjeken,

Habberstad

et al. 2024

JCM

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The objective was to explore the associations between patient involvement in the rehabilitation process and improvements in function and goal attainment in the first year after rehabilitation. The longitudinal multicenter study RehabNytte provided data from participants who had been referred to rehabilitation (n = 2113). Quality indicator (QI) pass rates (% yes) were used to assess patient involvement in the rehabilitation process. The Patient-Specific Functional Scale (PSFS) (10 = best possible) was used to assess function. The outcome QI on goal achievement (response options of yes/no) was used to assess goal attainment. Logistic regression and paired sample t-tests were used to examine associations and mean changes in function from rehabilitation admission up to 3, 6, and 12 months. Most participants (95%) were involved in goal-setting, which was positively associated with younger age (OR 0.97, 95% CI 0.95–0.99) and female sex (OR 1.87, 95% CI 1.15–3.02). Function improved over the follow-up period, with greater improvements in the active goal-setting group. Being involved in goal planning almost tripled the odds of goal attainment (OR 2.78, 95% CI 1.60–4.83) and involvement in the rehabilitation plan almost doubled it (OR 1.99, 95% CI 1.41–2.81). Most participants were involved in rehabilitation goal-setting/planning and being involved was associated with beneficial functional outcomes and greater goal attainment.

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Section: Discussionmentioning

confidence: 99%

Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study

Sagen,

Kjeken,

Habberstad

et al. 2024

JCM

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“…The need for multi-stakeholder collaboration to improve PI in healthcare is also the conclusion of a survey conducted by EUPATI BE, a platform for patient education established in 2017 as EUPATI's National Platform in Belgium ( 11 ). Its survey was conducted on different stakeholder groups (academic stakeholders, patient organizations, patients, industry, and policymakers) than those in our study.…”

Section: Discussionmentioning

confidence: 99%

“…More EUPATI patient training was one the activities most desired by patient organizations, academia, and the pharmaceutical industry, as mentioned in both the online survey and the direct interviews ( Table 4 ). For academia, it would also be helpful to have EUPATI training to increase interaction with EUPATI CH and the use of its toolbox material ( 11 ).…”

Section: Stakeholders' Comments Directed At Eupati Chmentioning

confidence: 99%

The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project

Sessa

Schmid²,

Tolotti

et al. 2021

Front. Med.

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Background: The European Patients' Academy on Therapeutic Innovation Switzerland (EUPATI CH) was established as an association in 2016 with the mission to improve patient empowerment in Switzerland, raise public awareness of EUPATI's education material, and foster multi-stakeholder partnerships in order to promote public involvement in all aspects of medicines research and development (R&D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&D in Switzerland and to obtain guidance and recommendations for future activities, EUPATI CH initiated a multi-stakeholder survey on PI experiences, hurdles, and best practices. The survey enabled EUPATI CH to obtain and analyze the views of various stakeholders and shape its workplan.Methods: Data collection occurred between January and July 2019 using a survey and semi-structured interviews with individual stakeholders from different groups. The online survey responses were analyzed using quantitative methods and the interviews were analyzed using qualitative methods.Results: The online survey was completed by 55 respondents (10%), and the semi-structured interviews were conducted with 14 stakeholders. Respondents to the online survey were patient representatives (45%), researchers from academia (25%), individuals from the pharmaceutical industry (9%), healthcare professionals (23%), and representatives from government agencies (6%). Some respondents were also members of EUPATI CH. Thirty-eight percent of respondents consider PI in Switzerland to be limited or absent. They identified the main barriers to PI as, first and foremost, a lack of funds and human resources (65%), followed by a lack of information and a lack of education on how to become a patient advocate (21%), a lack of collaboration with other stakeholders (16%), and a lack of adequate resources. Respondents' expectations of EUPATI CH's role in supporting PI were to provide education for active PI and improve networking and collaboration among stakeholders.Conclusions: EUPATI CH's multi-stakeholder research identified some of the difficulties in promoting PI in medicines R&D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.

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“…A brief inventory of some of the existing EUPATI National Platforms (ENPs) 3 in other countries reveals a diverse picture of approaches in different countries. Whereas, training is the central focus for most ENPs, network building, and raising awareness appear to be important as well (16). As an additional spin-off, active participation by all stakeholders within the Dutch EUPATI context is expected to lower thresholds for future contacts between stakeholders and patient representatives.…”

Section: Benefits Extend the Aspect Of Educationmentioning

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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Improving Patient Involvement in the Lifecycle of Medicines: Insights From the EUPATI BE Survey

Cited by 4 publications

References 7 publications

Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study

Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study

The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project

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

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