On the path to a science of patient input

Anderson, Margaret; McCleary, Kate

doi:10.1126/scitranslmed.aaf6730

Cited by 56 publications

(44 citation statements)

References 4 publications

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“…This study also demonstrates the ability of PAGs to rapidly engage CeD patients for research, which is encouraging for future efforts using patient input to drive clinical research directed at a better understanding of cofactors that trigger CeD, improved disease management, and non-dietary therapies [32]. Finally, our results emphasize the need for greater access to high quality CeD care, and highlight an opportunity for HCPs and PAGs to work collaboratively to achieve improved disease management by raising levels of awareness and education.…”

Section: Discussionmentioning

confidence: 70%

Self-Reported Dietary Adherence, Disease-Specific Symptoms, and Quality of Life are Associated with Healthcare Provider Follow-Up in Celiac Disease

Hughey¹,

Ray²,

Lee³

et al. 2017

Gastroenterology

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Section: Discussionmentioning

confidence: 70%

Self-Reported Dietary Adherence, Disease-Specific Symptoms, and Quality of Life are Associated with Healthcare Provider Follow-Up in Celiac Disease

Hughey¹,

Ray²,

Lee³

et al. 2017

Gastroenterology

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“…Patients are keen to be heard in health care, research, and policy decision making by providing input; capacity exists for the robustness of that input to be considerably strengthened (26). In one example, Why patients should be involved in HTA researchers partnered with a patient advisory board whose members were able to identify that their active presence at focus groups of patients added value to the researcher-led focus groups by instilling trust and confidence of the participants (27).…”

Section: Argument Centering On Evidentiary Contributionsmentioning

confidence: 99%

Why Patients Should Be Involved in Health Technology Assessment

Wale¹,

Scott

Hofmann

et al. 2017

Int J Technol Assess Health Care

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Objectives: Some countries make considerable effort to involve patients and patient groups in their health technology assessment (HTA) processes; others are only just considering or are yet to consider patient involvement in HTA. Methods: This commentary offers four arguments why patient involvement should be prioritized by those HTA agencies that do not yet involve patients: (1) from a patients' rights perspective, (2) based on patient and community values, (3) centering on evidentiary contributions, and (4) from a methodological perspective. Results: The first argument builds on the Alma-Ata Declaration, which holds that patients have a right and duty to have a say in the planning and delivery of their health care, individually and collectively. Where HTA is used to determine access to technologies and services, we argue that patients have a right to be heard. The second argues that decisions about treatments and services need to be aligned with the core values and morals of the patients whom the health system serves. The third argues that patients have unique knowledge and insights about living with a health condition and their needs for services and treatments regarding that condition, which can add to the knowledge base and value of the HTA process. The fourth argues that involvement of patients can facilitate methodological advancement of HTA, in areas such as early scientific advice and managed entry with evidence development. Conclusions: An HTA process that includes patient perspectives can, therefore, provide added value to patients, policy makers and healthcare professionals alike.

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“…Regulators would also benefit from solutions that bring MAPP closer if not integrated into platforms that would help qualify and validate biomarkers [43]. Patient-centred and continuum of care solutions will inevitably lead to patient empowerment as highlighted in the PerMed report and now recognised as an asset for both therapeutic progress [44] and evolution of the regulatory framework [45]. …”

Section: Impact and Expected Deliveries Of Innovative Platformsmentioning

confidence: 99%

Precision Medicine: From “Omics” to Economics towards Data-Driven Healthcare - Time for European Transformation

et al. 2017

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There is room for improvement for optimally bringing the latest science to the patient while taking into account patient priorities such as quality of life. Too often, regulatory agencies, governments, and funding agencies do not stimulate the integration of research into care and vice versa. Re-engineering the drug development process is a priority, and healthcare systems are long due for transformation. On one hand, patients need efficient access to treatments, but despite precision oncology approaches, efficiently shared screening platforms for sorting patients based on the biology of their tumour for trial access are lacking and, on the other hand, the true value of cancer care is poorly addressed as central questions such as dose, scheduling, duration, and combination are not or sub-optimally addressed by registration trials. Solid evidence on those parameters could potentially lead to a rational and wiser use of anti-cancer treatments. Together, optimally targeting patient population and robust comparative effectiveness data could lead to more affordable and economically sound approaches. The drug development process and healthcare models need to be interconnected through redesigned systems taking into account the full math from drug development into affordable care.

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On the path to a science of patient input

Abstract: No longer is patient engagement the fanciful notion it was at the start of FasterCures ’ journey in 2003, and the rush of activity is welcome and vital.

Cited by 56 publications

References 4 publications

Self-Reported Dietary Adherence, Disease-Specific Symptoms, and Quality of Life are Associated with Healthcare Provider Follow-Up in Celiac Disease

Self-Reported Dietary Adherence, Disease-Specific Symptoms, and Quality of Life are Associated with Healthcare Provider Follow-Up in Celiac Disease

Why Patients Should Be Involved in Health Technology Assessment

Precision Medicine: From “Omics” to Economics towards Data-Driven Healthcare - Time for European Transformation

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