OP79 Experimenting HTAi Patient Group Submission Template To Involve Patients

2017 ◽  
Vol 33 (S1) ◽  
pp. 37-38
Author(s):  
Alessandra Lo Scalzo ◽  
Anna Maria Vincenza Amicosante ◽  
Francesca Gillespie ◽  
Emilio Chiarolla ◽  
Tom Jefferson ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Patient Group ◽  
Technology Assessment ◽  
Information Needs ◽  
Public Involvement ◽  
Geographical Location ◽  
Health Technology ◽  
Specific Information ◽  
Self Administration ◽  
Umbrella Organization

INTRODUCTION:The Health Technology Assessment International (HTAi) community recognises the importance of including patients’ views from published research and systematically obtaining input from patient organizations (POs). The HTAi's Patients and Public Involvement Subgroup has elaborated the Patient Group Submission Template for HTA (HTA Template) to facilitate the collection of evidence from patients via POs involvement. In 2015 AGENAS outlined a procedure to involve POs and tested the HTA Template within a Health Technology Assessment (HTA) report on dialysis.METHODS:The HTAi template was translated into Italian and adapted to the HTA report's specific information needs: to understand patients’ experiences with different dialysis modalities and any delivery problems at the regional level. Some questions were reformulated, others were cut and two different versions of the template were used. One was tailored to POs representatives and the other to individual patients selected with a purposive sampling procedure. We provided the HTA Template to POs appointed by an umbrella organization, Cittadinanzattiva, for their input and to identify other relevant POs to be involved. We identified a list of four associations, based on geographical location and typology of patients. Each POs representative completed the first template and administered the second one to, at least one patient for each five dialysis modalities. AGENAS staff provided support on a cascade basis POs collected and returned all templates.RESULTS:Researchers performed a thematic analysis of the answers received and this input was introduced in the HTA report within the chapter on Patients Aspects. Patients’ experiences closely corresponded to the ones in our qualitative literature's systematic review. However, PO representatives templates revealed an important problem of equity in access to different dialysis modalities across regions that we highlighted in the HTA report's recommendations.CONCLUSIONS:One of the template's limitations was related to self-administration. In some cases, a lack of familiarity with communicating one's views in writing may have affected the survey's informative power. This pilot also demonstrated the need for a more inclusive involvement procedure, as some important POs were not initially represented by the umbrella organization.

VP165 Landscape Assessment: Patient Engagement In Health Technology Assessment

2017 ◽  
Vol 33 (S1) ◽  
pp. 224-225
Author(s):  
Elisabeth Oehrlein ◽  
Jason Harris ◽  
Nicole Labkoff ◽  
Eleanor Perfetto ◽  
Manal Ziadeh ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Engagement ◽  
Public Involvement ◽  
Web Search ◽  
Health Technology ◽  
Public Consultation ◽  
Patient Questionnaire ◽  
Draft Guidance ◽  
Stakeholder Consultation

INTRODUCTION:Understanding the current landscape of patient engagement across value decision-making bodies internationally is a critical first step toward improving the patient centricity of Health Technology Assessment (HTA). This study assessed: (i) Terms and definitions used; (ii) Patient engagement opportunities; (iii) Evidence of patient engagement.METHODS:A sample of country-specific HTA's (HTA; n = 6), professional organizations (PO; n = 4), and collaborations/independent organizations (CO; n = 3) was selected for representativeness. Information was gathered through: (i) targeted web search and (ii) emailing organizations directly. Definitions, HTA methods documents, and the three most recent evaluations were identified, abstracted, and compared. Data were collected between September-October 2016.RESULTS:Numerous terms are used to describe patient engagement: patient input (HTA = 1, PO = 1), patient-group submitted information (HTA = 1), cooperation with patients/users (HTA = 1), public consultation (HTA = 1), patient perspectives (HTA = 1, PO = 1), involvement of people affected (HTA = 1), patient involvement (HTA = 2), patient and public involvement (HTA = 1), lay involvement (HTA = 1), inclusion of patient representative (PO = 3), patient reports (PO = 1), patient preference (PO = 2), public consultation (CO = 1), stakeholder consultation (CO = 1), open input (CO = 1), stakeholder engagement (CO = 1), and patient participation (CO = 1). Opportunities for patient engagement were described as: patient questionnaire (HTA = 2); comment period (HTA = 1; CO = 1); committee participation (HTA = 3; PO = 3); propose topics (HTA = 1); draft guidance (HTA = 1); general stakeholder forum (CO = 1). While organizations outline opportunities for patient engagement, not all organizations have clear evidence the practices are used or have impact. Recent evaluations demonstrate clear evidence of engagement (HTA = 2); Unclear or mixed evidence (HTA = 1; PO = 1; CO = 2); No evidence (HTA = 3; PO = 3; CO = 1).CONCLUSIONS:There is substantial heterogeneity in the terms used to describe patient engagement activities across organizations. While a variety of opportunities for patient engagement are described, lack of clear evidence to how patient engagement practices are consistently used may contribute to the perception that engagement by HTAs.

scholarly journals PATIENT AND PUBLIC INVOLVEMENT IN SCOPE DEVELOPMENT FOR A PALLIATIVE CARE HEALTH TECHNOLOGY ASSESSMENT IN EUROPE

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A40.3-A41 ◽  
Author(s):  
Louise Brereton ◽  
Elizabeth Goyder ◽  
Christine Ingleton ◽  
Clare Gardiner ◽  
Jim Chilcott ◽  
...  
Keyword(s):  
Palliative Care ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Care Health

scholarly journals Choosing health technology assessment and systematic review topics: The development of priority-setting criteria for patients’ and consumers’ interests

2011 ◽  
Vol 27 (4) ◽  
pp. 348-356 ◽  
Author(s):  
Hilda Bastian ◽  
Fülöp Scheibler ◽  
Marco Knelangen ◽  
Beate Zschorlich ◽  
Mona Nasser ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Priority Setting ◽  
Technology Assessment ◽  
Information Seeking ◽  
General Public ◽  
Information Needs ◽  
Health Technology ◽  
Theoretical Framework ◽  
Sufficient Evidence ◽  
Consumer Perspective

Background: The Institute for Quality and Efficiency in Health Care (IQWiG) was established in 2003 by the German parliament. Its legislative responsibilities are health technology assessment, mostly to support policy making and reimbursement decisions. It also has a mandate to serve patients’ interests directly, by assessing and communicating evidence for the general public.Objectives: To develop a priority-setting framework based on the interests of patients and the general public.Methods: A theoretical framework for priority setting from a patient/consumer perspective was developed. The process of development began with a poll to determine level of lay and health professional interest in the conclusions of 124 systematic reviews (194 responses). Data sources to identify patients’ and consumers’ information needs and interests were identified.Results: IQWiG's theoretical framework encompasses criteria for quality of evidence and interest, as well as being explicit about editorial considerations, including potential for harm. Dimensions of “patient interest” were identified, such as patients’ concerns, information seeking, and use. Rather than being a single item capable of measurement by one means, the concept of “patients’ interests” requires consideration of data and opinions from various sources.Conclusions: The best evidence to communicate to patients/consumers is right, relevant and likely to be considered interesting and/or important to the people affected. What is likely to be interesting for the community generally is sufficient evidence for a concrete conclusion, in a common condition. More research is needed on characteristics of information that interest patients and consumers, methods of evaluating the effectiveness of priority setting, and methods to determine priorities for disinvestment.

A voice to be heard: patient and public involvement in health technology assessment and clinical practice guidelines in Malaysia

2021 ◽  
Vol 37 (1) ◽  
Author(s):  
Hanin Farhana Kamaruzaman ◽  
Ku Nurhasni Ku Abd Rahim ◽  
Izzuna Mudla Mohamed Ghazali ◽  
Mohd Aminuddin Mohd Yusof
Keyword(s):  
Clinical Practice ◽  
Health Technology Assessment ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Initial Development ◽  
Limited Health Literacy

Abstract Patient and public involvement (PPI) in health technology assessment (HTA) is widely promoted to ensure that all health-related decisions are made after taking into consideration the viewpoints of important stakeholders. In Malaysia, patients or their representatives have been involved in the development of HTA and Clinical Practice Guidelines (CPG) since 2009 and their influences have been growing steadily over the years. This paper aimed to describe the journey, achievements, challenges, and future direction of the PPI throughout all stages of the development and implementation of HTA and CPG in Malaysia. Currently, in Malaysia, patients or their representatives are mainly involved during the initial development of HTA and CPG drafts as well as during the internal and external reviews. Additionally, they are also encouraged to be involved during the implementation of HTA and CPG recommendations. Although their involvement in this aspect has slowly increased over time, challenges remain in the form of limited representativeness of selected patients or carers, uncertainty on the level of patient involvement allowed during the HTA/CPG development processes, and limited health literacy, which affect their ability to contribute meaningfully throughout the processes. Continuous improvement in these processes is important as patients or their representatives play a pivotal role in ensuring transparency, accountability, and credibility throughout the HTA/CPG development and decision-making processes.

scholarly journals Deliberative Processes by Health Technology Assessment Agencies: A Reflection on Legitimacy, Values and Patient and Public Involvement Comment on "Use of Evidence-informed Deliberative Processes by Health Technology Assessment Agencies Around the Globe"

2020 ◽  
Author(s):  
Mireille Goetghebeur ◽  
Marjo Cellier
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Positive Impact ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
What Works ◽  
Deliberative Processes ◽  
Core Issues ◽  
Public And Patient Involvement

Legitimacy of deliberation processes leading to recommendations for public financing or clinical practice depends on the data considered, stakeholders involved and the process by which both of these are selected and organised. Oortwijn et al provides an interesting exploration of processes currently in place in health technology assessment (HTA) agencies. However, agencies are struggling with core issues central to their legitimacy that goes beyond the procedural exploration of Oortwijn et al, such as: how processes reflect the mission and values of the agencies? How they ensure that recommendations are fair and reasonable? Which role should be given to public and patient involvement? Do agencies have a positive impact on the healthcare system and the populations served? What are the drivers of their evolution? We concur with Culyer commentary on the need of learning from doing what works best and that a reflection is indeed needed to "enhance the fairness and legitimacy of HTA."

OP110 Survey Of Health Technology Assessment Evaluation Strategies For Patient And Public Involvement

2017 ◽  
Vol 33 (S1) ◽  
pp. 51-52
Author(s):  
Laura Weeks ◽  
Julie Polisena ◽  
Anna Scott ◽  
Anke-Peggy Holtorf ◽  
Sophie Staniszewska ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Participant Satisfaction ◽  
The Public ◽  
Evaluation Strategies ◽  
And Training ◽  
Process Evaluations

INTRODUCTION:Although there is increased awareness of patient and public involvement (PPI) among Health Technology Assessment (HTA) organizations, evaluations of PPI initiatives are relatively scarce. Our objective as members of HTAi's Patient and Citizen Involvement Group (PCIG) was to advance understanding of the range of evaluation strategies adopted by HTA organizations and their potential usefulness.METHODS:In March 2016, a survey was sent to HTA organizations through the International Network of Agencies for Health Technology Assessment (INAHTA) and contacts of members of HTAi's PCIG. Respondents were asked about their organizational structure; how patients and members of the public are involved; whether and how PPI initiatives have been evaluated, and, if so, which facilitators and challenges to evaluation were found and how results were used and disseminated.RESULTS:Fifteen programs from twelve countries responded that involved patient (14/15) and members of the public (10/15) in HTA activities. Seven programs evaluated their PPI activities, including participant satisfaction (5/7), process evaluations (5/7) and impact evaluations (4/7). Evaluation results were used to improve PPI activities, identify education and training needs, and direct strategic priorities. Facilitators and challenges revolved around the need for stakeholder buy-in, sufficient resources, senior leadership, and including patients in evaluations. Participants also provided suggestions based on their experiences for others embarking on this work, for example including patients and members of the public in the process.CONCLUSIONS:We identified a small but diverse set of HTA organizations internationally that are evaluating their PPI activities. Our results add to the limited literature by documenting a range of evaluation strategies that reflect the range of rationales and approaches to PPI in HTA. It will be important for HTA organizations to draw on formal evaluation theories and methods when planning future evaluations, and to also share their approaches and experiences with evaluation.

OP33 Developing A Public Version Of A Health Technology Assessment Report

2017 ◽  
Vol 33 (S1) ◽  
pp. 15-15
Author(s):  
Naomi Fearns ◽  
Emma Riches ◽  
Joanna Kelly ◽  
Karen Macpherson
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Chronic Wounds ◽  
Health Technology ◽  
Wound Dressings ◽  
Advisory Group ◽  
Accurate Information ◽  
The Public ◽  
Patient Version

INTRODUCTION:As the Health Technology Assessment (HTA) community moves towards greater levels of Patient and Public Involvement (PPI), the need to communicate with the public about the results and impact of HTA, and of PPI itself, is also increasing. DECIDE was a European Commission funded collaborative project arising from the GRADE working group, which developed and evaluated strategies for effectively communicating the recommendations from clinical guidelines to a multiple stakeholders. The Scottish Intercollegiate Guidelines Network (SIGN) led the work stream on patients and the public (1, 2). We extended the findings to develop a patient/public version of an HTA on Antimicrobial Wound Dressings (AWDs). The clinical and cost effectiveness evidence was inconclusive (3) which increased the importance of engagement with clinical and patient/public stakeholders.METHODS:A literature review, and a series of focus groups and user testing informed the development of a set of principles for designing patient versions of guidelines (1,2). Using these principles developed by the DECIDE collaboration, a patient version of the HTA was developed, in partnership with public volunteers and a standing public communications advisory group.RESULTS:We incorporated key facilitators of usability, such as distinct branding as material for the public, a clearly communicated purpose, and the layering of information. Other facilitators included a “friendly” and accessible tone which was achieved by the use of colour, icons, simple language and charts, and brief chunked text. While feedback about clarity, design and usefulness was generally positive, some public reviewers were concerned by the level of uncertainty and complexity in the findings.CONCLUSIONS:Using the principles from the DECIDE project, it is feasible and useful to develop public versions of an HTA report. The patient version is currently informing the development of educational material for patients/public about chronic wounds and AWDs by the Scottish Government. However, it remains a challenge to balance the complexity and uncertainty underlying evidence-based recommendations, with the need to provide accessible, understandable, and yet accurate information about them for the public.

scholarly journals Exploration of the visibility of patient input in final recommendation documentation for three health technology assessment bodies

2020 ◽  
Vol 36 (3) ◽  
pp. 197-203 ◽  
Author(s):  
Janet L. Wale ◽  
Melissa Sullivan
Keyword(s):  
Health Technology Assessment ◽  
Patient Group ◽  
Technology Assessment ◽  
Patient Involvement ◽  
Health Technology ◽  
Appraisal Committee ◽  
Cancer Drug ◽  
Clear Understanding ◽  
Patient Groups ◽  
Patient Expert

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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