VP63 National Institute For Health And Care Excellence (NICE) Technology Appraisal Patient Expert Feedback: 15 month analysis

2017 ◽  
Vol 33 (S1) ◽  
pp. 177-178
Author(s):  
Chloe Kastoryano ◽  
Lizzie Thomas ◽  
Heidi Livingstone ◽  
Gillian Leng
Keyword(s):  
Online Survey ◽  
Patient Involvement ◽  
Public Involvement ◽  
Appraisal Committee ◽  
Technology Appraisal ◽  
Committee Meeting ◽  
The Public ◽  
Formal Policy ◽  
Quantitative Results ◽  
Patient Expert

INTRODUCTION:The National Institute for Health and Care Excellence (NICE) has a formal policy stating patients, carers and citizens are involved throughout each Health Technology Assessment (HTA). One key way patient/carer organizations are involved is by nominating patient experts to participate in appraisal committee meetings.A NICE 2014 report (1) on Patient Experts experiences identified a need to routinely survey Patient Experts. This has been ongoing since October 2015. This study highlights key findings, including new recommendations and whether previous concerns have been addressed.METHODS:We refined the 2012 survey to be routinely sent to all patient experts that attended a NICE technology appraisal committee meeting. Between October 2015 and December 2016 this online survey was sent to eighty-eight patient experts. After analysis the findings were compared to the previous report to identify whether concerns have been addressed and whether new recommendations should be considered.RESULTS:There was a response rate of 47 percent (n = 41). Quantitative results and qualitative quotes demonstrate that patient experience varies widely. Key findings from the new data revealed that patient experts feel supported by the Public Involvement Programme, however would welcome more opportunities to speak. Notable improvements since 2012 include favourable opinions of support documents and the Chair more regularly introducing themselves to the patient expert before the meeting. Some experts still find the paperwork cumbersome and find the meetings very technical.CONCLUSIONS:Progress has been made since 2012, but further improvements could facilitate even more effective patient involvement. We continue to routinely measure experiences to identify and address evolving issues. Some tensions remain between NICE's remit and processes, and patients expectations of these. The findings, although specific to NICE, hopefully can feed into other patient involvement developments in the wider HTA ecosystem.

VP39 The Alphabet Lottery? How NICE Outcomes Vary By Appraisal Committee

2019 ◽  
Vol 35 (S1) ◽  
pp. 86-86
Author(s):  
Richard Macaulay ◽  
Lok Wan Liu ◽  
Cornelia Roibu ◽  
Andrea Berardi
Keyword(s):  
Cost Effectiveness ◽  
The Other ◽  
Appraisal Committee ◽  
Technology Appraisal ◽  
The Public ◽  
Chi Squared ◽  
C 50 ◽  
To Receive ◽  
Disciplinary Group ◽  
53 C 55

IntroductionNICE (National Institute for Health and Care Excellence) makes recommendations on the public reimbursement of medicines based on their clinical- and cost-effectiveness. The recommendation is made by an Appraisal Committee (comprising a multi-disciplinary group of independent experts) as part of a technology appraisal. There are four Appraisal Committees (A,B,C,D); this research investigates whether appraisal outcomes vary by committee.MethodsAll publicly-available Final Appraisal Determinations from NICE Single Technology Appraisals (STA) were screened (01/10/2009-14/11/2018) and key data were extracted. Homogeneity in rates of acceptance or rejection across the committees was assessed using Chi-squared tests.ResultsThe Appraisal Committee was identified for 298 technologies, 56% (168/298) of which were ‘recommended’. The number of technologies assessed by each committee was similar (A:79, B:62, C:91, D:66). However, STAs conducted by Committee D were significantly less likely to receive ‘recommended’ outcomes (A:68% [54/79], B:65% [40/62], C:53% [48/91], D:39% [26/66]; p < 0.01). STAs for oncology indications had higher ’not recommended’ outcomes than those for non-oncology indications (25% vs. 9%). The lower ‘recommendation’ rates for committee D persisted across oncology (A:60%, B:83%, C:50%, D:38%; p = 0.01) and non-oncology indications (A:73%, B:53%, C:55%, D:40%; p < 0.01). However, STAs conducted by Committee D were significantly more likely to receive ‘optimized’ recommendations (A:16%, B:21%, C:33%, D: 36%; p < 0.01) and when considering the rates of ‘recommended’ and ‘optimized’ outcomes compared to ‘only in research’ and ‘not recommended’ outcomes, no significant differences were found (A:85%, B: 85%, C:86%, D:76%; p = 0.27).ConclusionsSTAs undertaken by NICE Appraisal Committee D was associated with a significantly lower rate of ‘recommended’ outcomes but tended to an ‘optimized’ recommendation significantly more than the other committees. Further research is needed to determine if this reflects any deviation in uniform implementation of NICE methodology between Committees.

PP124 Smart Capability Building For Effective Patient Involvement

2019 ◽  
Vol 35 (S1) ◽  
pp. 59-60
Author(s):  
Claire Davis ◽  
Sophie Hughes ◽  
Susan Myles
Keyword(s):  
Best Practice ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
The Public ◽  
Health Technologies ◽  
Capability Building ◽  
Working Together ◽  
Strategy Building

IntroductionA new Health Technology Assessment (HTA) agency, Health Technology Wales (HTW), has been established to consider the identification, appraisal, and adoption of non-medicine health technologies. This includes, for example, medical devices, surgical procedures and diagnostics. HTW recognizes the importance of effective patient and public involvement (PPI) and is building smart capabilities.MethodsHTW consulted with external organizations to identify the first steps toward effective PPI. Public partners were recruited as a priority before working together on a PPI strategy. Building smart capabilities is key to establishing effective PPI and future-proofing. HTW established a PPI Standing Group to inform HTW throughout its work, including the development of processes and procedures.ResultsKnowledge and resources have been shared and future collaborations identified, including events to encourage new topics from patients and the public. The HTW PPI lead has become a member of key PPI groups, locally and internationally. HTW has recruited public partners who are actively contributing as full members of the Assessment Group and the Appraisal Panel; two members on each Committee. The PPI Standing Group has been established. They have provided advice and co-produced PPI tools for piloting.ConclusionsThe PPI Standing Group concluded that PPI methods and approaches should be tailored for each project based on best practice, and should be piloted to allow them to evolve based on impact evaluation. A PPI strategy or framework would be more useful at a later stage. HTW is committed to identifying and following best practice. Future-proofing and building smart capability will be key to ensuring that HTW develops effective PPI that can be dynamic and responsive to the evolving PPI and HTA landscapes.

scholarly journals Patient and public involvement in numerical aspects of trials: a mixed methods theory-informed survey of trialists’ current practices, barriers and facilitators

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e046977
Author(s):  
Beatriz Goulao ◽  
Camille Poisson ◽  
Katie Gillies
Keyword(s):  
Mixed Methods ◽  
Online Survey ◽  
Public Involvement ◽  
Theoretical Domains Framework ◽  
Patient And Public Involvement ◽  
Barriers And Facilitators ◽  
Future Research ◽  
Mixed Methods Approach ◽  
Scarce Resources ◽  
The Public

ObjectiveWe aimed to find out if trialists involve patients and the public in numerical aspects of trials, how and what are the barriers and facilitators to doing it.DesignWe developed a survey based on the Theoretical Domains Framework. We used a mixed methods approach to analyse the data and to identify important domains.SettingOnline survey targeting UK-based trial units.ParticipantsStakeholders working in UK-based clinical trials, 18 years old or over, understand English and agree to take part in the study.Outcome measuresTrialists’ behaviour of involving patients and the public in numerical aspects of trials and its determinants.ResultsWe included 187 respondents. Majority were female (70%), trial managers (67%) and involved public and patient partners in numerical aspects of trials (60%). We found lack of knowledge, trialists’ perception of public and patient partners’ skills, capabilities and motivations, scarce resources, lack of reinforcement, and lack of guidance were barriers to involving public and patient partners in numerical aspects of trials. Positive beliefs about consequences were an incentive to doing it.ConclusionsMore training, guidance and funding can help trialists involve patient and public partners in numerical aspects, although they were uncertain about public and patient partners’ motivation to be involved. Future research should focus on identifying public and patient partners’ motivations and develop strategies to improve the communication of numerical aspects.

OP27 Patient Engagement At Scottish Medicines Consortium Committee Meetings

2018 ◽  
Vol 34 (S1) ◽  
pp. 11-11
Author(s):  
Lindsay Lockhart ◽  
Jennifer Dickson ◽  
Anne Lee ◽  
Peter McGrath ◽  
Yvonne Hughes
Keyword(s):  
Lived Experience ◽  
Patient Group ◽  
Patient Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
Advisory Group ◽  
Willingness To Participate ◽  
The Public ◽  
Group Participation ◽  
Patient Groups

Introduction:Since 2014 patient group representatives have been able to observe Scottish Medicines Consortium (SMC) committee meetings as members of the public. However, they have had no opportunity to participate in discussions on their submission on the patient experience of living with the condition under review. In 2017, to strengthen patient engagement, we revised our processes to enable representatives from all submitting patient groups to play a bigger part in the monthly meeting.Methods:The SMC Public Involvement Network (PIN) Advisory Group consulted on potential issues around patient group participation in committee meetings. Recommendations approved for implementation included (i) provision of comprehensive information and support to participating patient group representatives, and (ii) holding an educational session for SMC members on ‘What matters to the patient’. The process change was introduced in June 2017. Patient group representatives are invited to complete an online survey on their experience of taking part in the meeting and working with the public involvement team. Implementation is being monitored and will be evaluated in a commitment to continuous improvement.Results:Since June 2017, 14 patient group representatives have attended SMC meetings for the discussion of their submission. This has enabled them to answer questions from committee members and clarify points relating to their submission, if required. Early feedback has been positive with participants believing that patient engagement has been strengthened and that the patient voice was heard and valued. Patient groups expressed a willingness to participate again. The evaluation of their experience to date will be presented.Conclusions:SMC now involves patient group participation at committee meetings, demonstrating commitment to listening and responding to stakeholders on patient engagement. Early feedback has been positive and suggests that discussions relating to quality of life impact on patients and carers better reflect the lived experience. This ensures we are meeting our commitment to openness and transparency and strengthens patient engagement in our process.

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.

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

2021 ◽  
Vol 8 ◽  
Author(s):  
Cristiana Sessa ◽  
Caecilia Schmid ◽  
Angela Tolotti ◽  
Annette Magnin ◽  
David Haerry ◽  
...  
Keyword(s):  
Human Resources ◽  
Quantitative Methods ◽  
Online Survey ◽  
Patient Involvement ◽  
Public Involvement ◽  
Public Awareness ◽  
Patient Empowerment ◽  
Structured Interviews ◽  
Education Material ◽  
Multi Stakeholder

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&amp;D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&amp;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&amp;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.

scholarly journals Innovative Patient Involvement During Covid-19: Keeping Patients at the Heart of HTA

2021 ◽  
Vol 3 ◽  
Author(s):  
Mark Rasburn ◽  
Helen Crosbie ◽  
Amanda Tonkinson ◽  
David Chandler ◽  
Tasneem Dhanji ◽  
...  
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
Potential Barriers ◽  
The United Kingdom ◽  
Patient Representatives ◽  
Virtual Setting ◽  
Patient Concerns ◽  
Rapid Shift

The COVID-19 pandemic and lockdown measures in the United Kingdom resulted in significant challenges and created opportunities for innovation to keep patients at the heart of HTA. The introduction of the Coronavirus Act 2020 and the associated public health guidance meant that NICE's conventional HTA methods were no longer feasible. NICE introduced rapid, innovative updates to patient and public involvement (PPI), decision-making meetings, and consultations to harness the expertise of patients and the public to ensure guidance addressed the expected concerns and identified barriers which could impact access. This article describes the PPI support for NICE's rapid shift to virtual meetings and virtual engagement. We utilize the authors' experience and patient and public contributor feedback to understand the experience of participating in a virtual setting and identify four themes: accessibility; inclusivity; transparency; and intrapersonal relationships and committee dynamics. The article also considers how patient representatives participated in, and facilitated, the development of guidance for a hypothetical technology to keep patients and the public at the heart of expedited and novel HTA processes to identify and understand the expected patient concerns and potential barriers for when a technology would be introduced.

scholarly journals Public and patient involvement in research on ageing and dementia

2020 ◽  
Vol 19 (3) ◽  
pp. 259-264
Author(s):  
Julian Ashton ◽  
Clare F. Aldus ◽  
Peter Richmond ◽  
Helen Allen
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Social Implications ◽  
Content Type ◽  
The Public ◽  
Leading Role ◽  
Current State ◽  
Significant Difference ◽  
Public And Patient Involvement

Purpose This paper aims to assess the current state, and various methods, of public and patient involvement, particularly but not exclusively in research on ageing and dementia. Design/methodology/approach Interviews were carried out with a researcher, who has had a leading role in research on dementia; a public contributor with extensive relevant experience; and a member of the research design service with responsibility for patient and public involvement. Findings All those involved in the research can benefit considerably from public and patient involvement and it can make a significant difference to the course of a project. The importance of choosing an appropriate method of involvement is discussed and planning for it in both financial terms and time allowed. Examples are given of successful studies. Research limitations/implications Those who took part in the interviews were chosen for their record in furthering public and patient involvement in research. There is no attempt to compare their views with those of the wider research community. Practical implications The various ways in which patients and the public are involved in relevant research is a guide to those designing projects and those who may want to explore opportunities for involvement. Social implications Social implications include being able to influence research projects, contributors of all ages find they are valued. Originality/value The format of the paper is original, eliciting material from three viewpoints on research and involvement.

OP80 Impact Of Patient Group Participation At Scottish Medicines Consortium Committee Meetings

2019 ◽  
Vol 35 (S1) ◽  
pp. 20-20
Author(s):  
Jennifer Dickson ◽  
Lindsay Lockhart ◽  
Louise Taylor ◽  
Jackie McCormack ◽  
Laura Walker
Keyword(s):  
Quality Of Life ◽  
Patient Group ◽  
Patient Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
The Public ◽  
Group Participation ◽  
Emerging Themes ◽  
The Impact

IntroductionThe Scottish Medicines Consortium (SMC) encourages patient group (PG) representatives to participate in the decision-making committee meetings, answering questions from committee members and providing points of clarity throughout discussions if required. In a continuous improvement approach the process and the participant experience is continually evaluated to monitor impact and emerging themes.MethodsThe interactions between committee members and PG representatives are recorded in writing by the public involvement team to monitor the questions or points of clarity raised. These interactions were analyzed using thematic analysis to look for emerging themes. Following the meeting, PG representatives are invited to complete an online survey on their experience of working with SMC.ResultsFrom July 2017 to October 2018, 36 PG representatives have attended committee meetings for the discussion of their submission. Committee members asked 17 PG representatives to contribute. Key themes that have emerged to date include insight into the impact of living with the condition on quality of life and how a new medicine may affect this. Survey feedback has been positive with participants reporting that patient engagement has been strengthened, and that the patient voice is heard, valued and supports committee members in making fully informed decisions. PG representatives expressed a willingness to participate again. Feedback also highlighted that the preparatory support offered to PG representatives by the public involvement team is highly valued.ConclusionsPatient group participation in committee meetings has been received positively by PG representatives. They report that discussions relating to quality of life impact of medicines on patients and carers better reflect the lived experience, enriching committee's deliberations. This demonstrates SMCs commitment to openness and transparency and has strengthened patient engagement in our processes.

VP01 Methods Of Patient Involvement Now And Beyond 2020: A Case Study

2019 ◽  
Vol 35 (S1) ◽  
pp. 75-75
Author(s):  
Heidi Livingstone ◽  
Gillian Leng ◽  
Victoria Thomas
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Patient Organisation ◽  
The Public ◽  
Included Patient ◽  
Different Types ◽  
Lay Members ◽  
The Common

IntroductionInvolving patients and the public in the health technology assessment (HTA) has always been fundamental to NICE. To ensure the appropriate method of patient involvement remains relevant to the evolving types of HTA, NICE uses varying methods of involvement. These methods have been reviewed to ensure they remain current and relevant for HTA now and beyond 2020, and also to give guidance on the approaches that should form a standard baseline and those that could be optional.MethodsWe identified and mapped the different methods of patient involvement used at NICE across five types of HTAs: diagnostics; medical technologies; medicines; ultra-orphan conditions; and surgical procedures. We looked at the varying methods of early engagement identifying similarities and differences, and considered the benefits and challenges of each.ResultsThe different methods of patient and public involvement include: lay members (generalist and topic expert) involved in decision making, individual patient input (written and oral), and patient group (organisation) input (written). The types of involvement fell into the following categories: written group submissions, written individual statements, surveys of individuals, pre-meeting events/workshops, oral testimonies at committees, and written consultation responses. The common methods across all HTA types were generalist lay members and consultations.ConclusionsThis review highlighted the varying methods of involvement at NICE and highlighted additional methods that could be standardised across the different types of HTAs as a baseline. These included patient organisation submissions and a method for additionally including individual patients in each type of HTA. We identified that where patient involvement started early and continued at each stage of the process including a pre-meeting event, it was particularly helpful to the stakeholders’ ability to contribute.

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