Proposal for capturing patient experience through extended value frameworks of health technologies

Inotai, András; Jakab, Ivett; Brixner, Diana I.; Campbell, Jonathan D.; Hawkins, Neil; Kristensen, Lars Erik; Charokopou, M.; Mountian, Irina; Szegvari, Boglarka; Kaló, Zoltán

doi:10.18553/jmcp.2021.27.7.936

Cited by 5 publications

(9 citation statements)

References 33 publications

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“…It is not enough to revise how patients are involved in the HTA process, the revision should also cover which societal factors and patient experience elements are considered for the decision and how. This will also help to create space for channelling and considering the patient input provided throughout the HTA processes ( 6 ). Such societal factors and patient experience elements could include improved access for vulnerable patient populations, responsiveness to the patient’s individual needs (e.g., convenience of treatment administration), caregiver quality of life, or the household’s financial burden ( 6 ).…”

Section: Resultsmentioning

confidence: 99%

Recommendations for patient involvement in health technology assessment in Central and Eastern European countries

Jakab,

Dimitrova,

Houÿez

et al. 2023

Front. Public Health

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IntroductionMeaningful patient involvement in health technology assessment (HTA) is essential in ensuring that the interests of the affected patient population, their families, and the general public are accurately reflected in coverage and reimbursement decisions. Central and Eastern European (CEE) countries are generally at less advanced stages of implementing HTA, which is particularly true for patient involvement activities. As part of the Horizon2020 HTx project, this research aimed to form recommendations for critical barriers to patient involvement in HTA in CEE countries.MethodsBuilt on previous research findings on potential barriers, a prioritisation survey was conducted online with CEE stakeholders. Recommendations for prioritised barriers were formed through a face-to-face workshop by CEE stakeholders and HTx experts.ResultsA total of 105 stakeholders from 13 CEE countries completed the prioritisation survey and identified 12 of the 22 potential barriers as highly important. The workshop had 36 participants representing 9 CEE countries, and 5 Western European countries coming together to discuss solutions in order to form recommendations based on best practices, real-life experience, and transferability aspects. Stakeholder groups involved in both phases included HTA organisation representatives, payers, patients, caregivers, patient organisation representatives, patient experts, health care providers, academic and non-academic researchers, health care consultants and health technology manufacturers/providers. As a result, 12 recommendations were formed specified to the CEE region’s context, but potentially useful for a broader geographic audience.ConclusionIn this paper, we present 12 recommendations for meaningful, systematic, and sustainable patient involvement in HTA in CEE countries. Our hope is that engaging more than a hundred CEE stakeholders in the study helped to spread awareness of the importance and potential of patient involvement and that the resulting recommendations provide tangible steps for the way forward. Future studies shall focus on country-specific case studies of the implemented recommendations.

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Section: Resultsmentioning

confidence: 99%

Recommendations for patient involvement in health technology assessment in Central and Eastern European countries

Jakab,

Dimitrova,

Houÿez

et al. 2023

Front. Public Health

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“…Alternatively, value elements can be integrated within existing value assessment frameworks through an augmented cost-effectiveness analysis, by including patient-centric domains in the calculation of incremental costs or effectiveness, or using them as cost-effectiveness threshold modifiers. Finally, value elements could be incorporated into existing or future MCDA tools with an explicit decision rule to guide decision making [ 24 ]. For developers, the inclusion of these value elements in decision making would provide a signal for additional evidence generation in a holistic manner and, if benefit claims are supported by adequate scientific evidence, those efforts will be rewarded [ 9 , 12 ].…”

Section: Discussionmentioning

confidence: 99%

“…Identification of the initial list of value elements was based on two foundation works of US value frameworks: the International Society for Pharmacoeconomics and Outcomes Research Value Flower [ 2 , 4 ] and the Institute for Clinical and Economic Review Value Assessment Framework [ 3 ]. These were extended with the results of two previously published studies: a systematic literature review that aimed to collect and analyze PEx value elements in published value frameworks [ 24 ] and an original research article applying mixed methods [ 5 ]. In the paper by Inotai et al [ 24 ], based on the systematic literature review, a multidisciplinary research team developed five potential PEx value elements that were challenged, discussed, and approved by a panel of international payer experts.…”

Section: Methodsmentioning

confidence: 99%

“…These were extended with the results of two previously published studies: a systematic literature review that aimed to collect and analyze PEx value elements in published value frameworks [ 24 ] and an original research article applying mixed methods [ 5 ]. In the paper by Inotai et al [ 24 ], based on the systematic literature review, a multidisciplinary research team developed five potential PEx value elements that were challenged, discussed, and approved by a panel of international payer experts. The original research article by dosReis et al [ 5 ] aimed to identify patient-informed value elements that can be used to make value assessments more patient centered.…”

Section: Methodsmentioning

confidence: 99%

“…Since I'm in a wheelchair, I require a lot of assistance from my family. could be incorporated into existing or future MCDA tools with an explicit decision rule to guide decision making [24]. For developers, the inclusion of these value elements in decision making would provide a signal for additional evidence generation in a holistic manner and, if benefit claims are supported by adequate scientific evidence, those efforts will be rewarded [9,12].…”

Section: Applicability In Value Assessmentmentioning

confidence: 99%

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Framework for Patient Experience Value Elements in Rare Disease: A Case Study Demonstrating the Applicability of Combined Qualitative and Quantitative Methods

McQueen

Mendola

Jakab³

et al. 2022

PharmacoEconomics Open

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Background and Objective Several novel methods have been suggested to extend a conventional value assessment to capture a more comprehensive perspective of value from a patient perspective. The objective of this research was to demonstrate a framework for implementing a combined qualitative and quantitative method to elicit and prioritize patient experience value elements in rare diseases. Neuromyelitis optica spectrum disorder was used as a case study. Methods The method for eliciting and prioritizing patient experience value elements involved a three-step process: (1) collecting potential patient experience value elements from existing literature sources followed by deliberation by a multistakeholder research team; (2) a pre-workshop webinar and survey to identify additional patient-reported value elements; and (3) a workshop to discuss, prioritize the value elements using a swing weighting method. Outcomes were prioritized value elements with normalized weights for patients considering a treatment for neuromyelitis optica spectrum disorder. Results A literature review and deliberation resulted in the following initial value elements: ability to reach important personal milestones, patient's financial burden, value of hope/balance or timing of risks and benefits, Uncertainty about long-term benefits and safety of the treatment, Patient empowerment through therapeutic advancement and technology, Caregiver/family's financial burden, patient experience related to treatment regimen, Therapeutic options, and Caregiver/ family's quality of life. Eight patients with neuromyelitis optica spectrum disorder participated in the case study. In the online survey, participants found the nine proposed patient experience value elements both understandable and important with no additions. During the workshop, 'Uncertainty about long-term benefits and safety,' 'Patient experience related to treatment regimen,' and 'Patient's financial burden' were found to be the most important patient experience value elements, with a respective weight of 25%, 19.2%, and 14.4% (out of total 100%). Conclusions This case study provides a framework for eliciting and prioritizing patient experience value elements using direct patient input. Although elements/weights may differ by disease, and even in neuromyelitis optica spectrum disorder, additional research is needed, value frameworks, researchers, and manufacturers can use this practical method to generate patient experience value elements and evaluate their impact on treatment selection.

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Assessing patient satisfaction with emergency department care delivery using a patient experience framework

Ferrand

Fredendall

Siemens

et al. 2022

Quality Management Journal

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Proposal for capturing patient experience through extended value frameworks of health technologies

Cited by 5 publications

References 33 publications

Recommendations for patient involvement in health technology assessment in Central and Eastern European countries

Recommendations for patient involvement in health technology assessment in Central and Eastern European countries

Framework for Patient Experience Value Elements in Rare Disease: A Case Study Demonstrating the Applicability of Combined Qualitative and Quantitative Methods

Assessing patient satisfaction with emergency department care delivery using a patient experience framework

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