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.

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.

OP79 Improving Public Understanding Of Scottish Medicines Consortium Advice

2019 ◽  
Vol 35 (S1) ◽  
pp. 20-20
Author(s):  
Jennifer Dickson ◽  
Louise Taylor ◽  
Jackie McCormack ◽  
Noreen Downes ◽  
Lindsay Lockhart ◽  
...  
Keyword(s):  
Development Process ◽  
Public Involvement ◽  
Good Practice ◽  
Public Understanding ◽  
Advisory Group ◽  
The Public ◽  
Independent Review ◽  
Patient Groups ◽  
Multi Stakeholder ◽  
Answer Format

IntroductionTransparency of processes and decision making is important to the Scottish Medicines Consortium (SMC). An independent review of access to new medicines in Scotland in 2016 recommended that SMC should review its communication of decisions with a view to achieving greater transparency. SMC therefore began to develop plain English summaries of advice on each new medicine.MethodsA multi-stakeholder approach was adopted to develop the summary documents, with patient groups involved. Firstly, a review of communications for the public from other HTA organizations was conducted. The public involvement team then held a workshop to find out what patient groups felt would be important to include when explaining SMC decisions to patients and the public. The process was also informed by reviewing examples of good practice from other parts of NHSScotland, including patient versions of Scottish Intercollegiate Guidelines Network (SIGN) clinical guidelines. Exemplar documents were then developed and feedback sought from the Public Involvement Network Advisory Group.ResultsA format was developed for the SMC ‘Decision Explained’ summaries consisting of a question and answer format for each medicine decision in a two page document. The summaries were piloted internally over a six month period, during which the development process and layout were finalized. Since September 2018 these summaries have been published on the website alongside the technical advice.ConclusionsPartnership working between SMC and patient groups has helped to develop a new way of communicating SMC's decisions to patients and the public in a clear way, helping to improve transparency and understanding. Evaluation of the summaries will be undertaken from six months of publication.

OP28 Partnership Working To Inform Patient Engagement In Health Technology Assessment

2018 ◽  
Vol 34 (S1) ◽  
pp. 11-12
Author(s):  
Lindsay Lockhart ◽  
Jennifer Dickson ◽  
Anne Lee ◽  
Martin Coombes
Keyword(s):  
Public Involvement ◽  
Scientific Evidence ◽  
Assessment Process ◽  
Advisory Group ◽  
Pharmaceutical Companies ◽  
Guidance Document ◽  
Patient Groups ◽  
Pharmaceutical Industries ◽  
Marketing Information ◽  
Multi Stakeholder

Introduction:The Scottish Medicines Consortium (SMC) works in partnership with patient groups and carers to capture their experiences to help inform decisions on new medicines. To better inform their participation in the SMC assessment process, patient groups highlighted a need for information from submitting pharmaceutical companies about the new medicine under review.Methods:We established a multi-stakeholder short life working group (SLWG) to explore how to meet these needs. The group comprised members of the SMC Public Involvement Network (PIN) Advisory Group, representatives of two pharmaceutical companies and the Association of British Pharmaceutical Industries, and the SMC public involvement team. The main outputs were the development of a new Summary Information for Submitting Patient Groups (SIP) form and supporting guidance document. The SIP form completed by the submitting pharmaceutical company is then shared by SMC's Public Involvement Team, to assist submitting patient groups.Results:The SIP form was implemented in June 2016, and following positive evaluation, became essential for inclusion with the pharmaceutical company's new medicine submission in June 2017. Feedback has been positive, with patient groups reporting that the form includes valuable information that they may not otherwise have been able to access including the positioning of the medicine in the treatment pathway, information on dosage, administration and side-effects. The form is also completed in plain English without overly technical or marketing information. Company representatives who have completed the form state that it provides clear information on the licensed indication, enables accessible scientific evidence for patients and families/carers, and allows them to give accurate and balanced information about the medicine.Conclusions:Partnership working with key stakeholders has enabled SMC to provide improved information to submitting patient groups. A better understanding of a new medicine may in turn allow patient groups to participate more effectively in the HTA.

scholarly journals Developing a typology of the roles public contributors undertake to establish legitimacy: a longitudinal case study of patient and public involvement in a health network

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e033370
Author(s):  
Jacqueline Barker ◽  
Pam Moule ◽  
David Evans ◽  
Wendy Phillips ◽  
Nick Leggett
Keyword(s):  
Lived Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Health Science ◽  
Strategic Decision ◽  
Longitudinal Case Study ◽  
Health Network ◽  
The Public ◽  
Patient Advocate

ObjectiveTo identify how public contributors established their legitimacy in the functioning of a patient and public involvement programme at a health network.DesignA longitudinal case study with three embedded units (projects) involving public contributors. Interviews (n=24), observations (n=27) and documentary data collection occurred over 16 months.SettingThe West of England Academic Health Science Network (WEAHSN), 1 of 15 regional AHSNs in England.ParticipantsInterviews were conducted with public contributors (n=5) and professionals (n=19) who were staff from the WEAHSN, its member organisations and its partners.ResultsPublic contributors established their legitimacy by using nine distinct roles: (1) lived experience, as a patient or carer; (2) occupational knowledge, offering job-related expertise; (3) occupational skills, offering aptitude developed through employment; (4) patient advocate, promoting the interests of patients; (5) keeper of the public purse, encouraging wise spending; (6) intuitive public, piloting materials suitable for the general public; (7) fresh-eyed reviewer, critiquing materials; (8) critical friend, critiquing progress and proposing new initiatives and (9) boundary spanner, urging professionals to work across organisations. Individual public contributors occupied many, but not all, of the roles.ConclusionsLived experience is only one of nine distinct public contributor roles. The WEAHSN provided a benign context for the study because in a health network public contributors are one of many parties seeking to establish legitimacy through finding valuable roles. The nine roles can be organised into a typology according to whether the basis for legitimacy lies in: the public contributor’s knowledge, skills and experience; citizenship through the aspiration to achieve a broad public good; or being an outsider. The typology shows how public contributors can be involved in work where lived experience appears to lack relevance: strategic decision making; research unconnected to particular conditions; or acute service delivery.

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.

scholarly journals Who should I involve in my research and why? Patients, carers or the public?

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Kristina Staley ◽  
Jim Elliott ◽  
Derek Stewart ◽  
Roger Wilson
Keyword(s):  
Lived Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Experiential Knowledge ◽  
Research Quality ◽  
The Public ◽  
Raising Awareness ◽  
Opportunities For Learning ◽  
Dissemination Of Research

AbstractPatient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers are therefore keen to involve patients, carers and public in their work, but are sometimes uncertain about who to involve. Some confusion may arise from the terms used. The UK’s catch-all term ‘patient and public involvement’ suggests this is a single activity, that perhaps both ‘patient’ and ‘public’ input are needed, or that either will do. The terms ‘patient’, ‘carer’ and ‘public’ have been defined, but are not used consistently. In fact there are many different contexts for involvement and many different kinds of decisions made, which then determine whose input will be most valuable.Clarity about the ‘why’ can help answer the ‘who’ question. However, not all researchers are clear about the purpose of involvement. While it is often understood to have a moral purpose, or to improve research quality, this doesn’t always identify who needs to be involved. When learning is understood to be the purpose of involvement, then the most appropriate people to involve are those with relevant experiential knowledge. In research projects, these are people with lived experience of the topic being investigated. This could be patients, carers, members of the public or health professionals.In this article we discuss how involving people who do not have the relevant experiential ‘lived’ knowledge may contribute to ineffective or tokenistic involvement. These people are as likely as researchers to make assumptions, risking missing key insights or resulting in outcomes that are off-putting or even harmful to research participants.We conclude that greater attention needs to be given to the question of who to involve. Raising awareness of the significance of experiential knowledge and the contextual factors that determine whose input will be most useful will help everyone to understand their roles and improve the quality of involvement. It will help to maximise the opportunities for learning, increasing the likelihood of impact, and helping to achieve the ultimate goal of improved health and services.

Patient and public involvement: in theory and in practice

2014 ◽  
Vol 128 (4) ◽  
pp. 318-325 ◽  
Author(s):  
A Robinson
Keyword(s):  
Research Design ◽  
Patient Group ◽  
Research Funding ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
North East ◽  
Funding Application

AbstractBackground:You've probably heard of patient and public involvement by now. You may even have ‘involved’ people in your research. But why involve patients, carers and members of the public at all? Is it just another hoop to jump through when preparing a research funding application for submission, or could it actually add something to your research? Could involving patients and members of the public even help you to design and deliver better research, with outcomes focused directly on the needs of your patient group?Objective:This article aims to answer some of these questions. It considers the theory underpinning patient and public involvement. This is followed by practical suggestions and advice to help you develop (or further develop if you already involve people!) patient and public involvement within your own research. There is also a case study to illustrate some of the main points, and extracts written by members of Research Design Service North East Consumer Panels.

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.

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.

scholarly journals Patient engagement in clinical trials: The Clinical Trials Transformation Initiative’s leadership from theory to practical implementation

2018 ◽  
Vol 15 (1_suppl) ◽  
pp. 19-22 ◽  
Author(s):  
Bray Patrick-Lake
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Patient Group ◽  
Patient Engagement ◽  
Crucial Role ◽  
Project Work ◽  
Practical Implementation ◽  
The Past ◽  
Patient Groups ◽  
Group Involvement

Patient engagement is an increasingly important aspect of successful clinical trials. Over the past decade, as patient group involvement in clinical trials has continued to increase and diversify, the Clinical Trials Transformation Initiative has not only recognized the crucial role patients play in improving the clinical trial enterprise but also made a deep commitment to help grow and shape the emerging field of patient engagement. This article describes the evolution of patient engagement including the origins of the patient engagement movement; barriers to successful engagement and remaining challenges to full and valuable collaboration between patient groups and trial sponsors; and Clinical Trials Transformation Initiative’s role in influencing the field through organizational practices, formal project work and resulting recommendations, and external advocacy efforts.

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