<b>7．Health Technology Assessment from the Viewpoint of Patients and <b>Patient Groups </b></b>

Health technology assessment (HTA) recommendations informed by patient concerns are seen to ensure democracy and legitimacy. We explored how written and oral patient involvement in two HTAs was reported on in publicly available final recommendations and discussion summaries of appraisal committees from three HTA bodies. We aimed to gain insights into how patient input was utilized by appraisal committees to better understand the goals of patient involvement and how these are being achieved. In each of the three HTA bodies, templated submission questionnaires provide a formal process for seeking written patient group input. Additionally, the National Institute for Health and Care Excellence (NICE) selects patient experts to provide a templated submission and attend appraisal committee meetings. For Scottish Medicines Consortium (SMC), a patient advocate and clinician combined meeting (PACE) discussed the cancer drug, referred to in the final recommendation. The discussion summaries of all appraisal committees contained references to patient involvement. Where two mechanisms for patient involvement were provided, oral input from the expert patients and PACE were more clearly documented than information from written patient group submissions. NICE reports focused on the perspective of the patient expert. The SMC report highlighted feedback from the PACE throughout. We suggest that the lack of clear reporting on the use of patient group input in deliberations and therefore accountability to patient groups limits progress in patient involvement in HTA. Patient groups may therefore not have a clear understanding of what information they can best provide to inform deliberations, and in reporting back to members.

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VP59 Patients Views On Providing Evidence; Feeding Into The Health Technology Assessment Ecosystem

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462317003373 ◽

2017 ◽

Vol 33 (S1) ◽

pp. 175-175

Author(s):

Heidi Livingstone ◽

Lizzie Thomas ◽

Gillian Leng ◽

Chloe Kastoryano

Keyword(s):

Health Technology Assessment ◽

Technology Assessment ◽

Public Involvement ◽

Response Rate ◽

Health Technology ◽

List Type ◽

Patient Organization ◽

Patient Organizations ◽

Patient Groups ◽

To Receive

INTRODUCTION:Patient evidence is submitted to the National Institute for Health and Care Excellence (NICE) by patient organizations and individual patient experts. Previously NICE developed a new patient organization evidence submissions template, based on the international HTAi patient submission template for medicines (1). The NICE template was reviewed by surveying committee members and also patient organizations who had used the submission template. The findings were presented at HTAi 2016.The limitation of that review was the low response rate from patient organizations. The key recommendation was to extend the survey to include a larger number of patient organizations. These local findings are an opportunity to contribute to the global Health Technology Assessment (HTA) ecosystem.METHODS:A project group was convened consisting of NICE staff, a committee lay member and a patient organization representative. Together we reassessed the suitability of the previous feedback survey. This was then sent out to patient groups who had completed the submission template from July 2014 to November 2016. Additionally, public involvement staff telephoned selected patient organizations to increase the feedback response rate and gain greater understanding. The anonymized results were shared with patients involved in NICE who helped interpret the results from a patient organization's perspective.RESULTS:Key findings are that patient organizations find: •the template clear•it was easiest to provide information about living with the condition•it was hardest to give information on equality issues and research evidence.They would also like a submission guide, and to receive feedback on their submissions.CONCLUSIONS:Although it was difficult to obtain feedback from the patient organizations on the submission template, the depth of information provided by them was fundamental to updating the template and producing a supporting guide.This feedback on the local English needs can be used when evaluating the international submission template to form a greater part of the HTA ecosystem.

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WHY PATIENTS SHOULD BE INVOLVED IN HEALTH TECHNOLOGY ASSESSMENT

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462317000241 ◽

2017 ◽

Vol 33 (1) ◽

pp. 1-4 ◽

Cited By ~ 11

Author(s):

Janet Wale ◽

Anna Mae Scott ◽

Bjørn Hofmann ◽

Sarah Garner ◽

Eric Low ◽

...

Keyword(s):

Health Technology Assessment ◽

Technology Assessment ◽

Patient Involvement ◽

Health Technology ◽

Health Condition ◽

Added Value ◽

Considerable Effort ◽

Policy Makers ◽

Community Values ◽

Patient Groups

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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Versorgungsforschung in der Klinischen Neuropsychologie – eine Standortbestimmung

Zeitschrift für Neuropsychologie ◽

10.1024/1016-264x.19.4.253 ◽

2008 ◽

Vol 19 (4) ◽

pp. 253-269 ◽

Cited By ~ 3

Author(s):

Sabine Heel ◽

Sonja Fischer ◽

Stefan Fischer ◽

Tobias Grässer ◽

Ellen Hämmerling ◽

...

Keyword(s):

Health Technology Assessment ◽

Technology Assessment ◽

Health Technology ◽

Empirische Forschung

Zunächst führt dieser Artikel in die wesentlichen Begrifflichkeiten und Zielstellungen der Versorgungsforschung ein. Er befasst sich dann mit der Frage, wie die einzelnen Teildisziplinen der Versorgungsforschung, (1) die Bedarfsforschung, (2) die Inanspruchnahmeforschung, (3) die Organisationsforschung, (4) das Health Technology Assessment, (5) die Versorgungsökonomie, (6) die Qualitätsforschung und zuletzt (7) die Versorgungsepidemiologie konzeptionell zu fassen sind, und wie sie für neuropsychologische Anliegen ausformuliert werden müssen. In diesem Zusammenhang werden die in den einzelnen Bereichen jeweils vorliegenden versorgungsrelevanten Studienergebnisse referiert. Soweit es zulässig ist, werden Bedarfe für die Versorgungsforschung und Versorgungspraxis in der Neurorehabilitation daraus abgeleitet und Anregungen für die weitere empirische Forschung formuliert. Der Artikel bezieht sich – entsprechend seines Anliegens – ausschließlich auf Studien, die sich mit der Situation der deutschen Neurorehabilitation befassen.

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