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.

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 Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047995
Author(s):  
Rosamund Yu ◽  
Bec Hanley ◽  
Simon Denegri ◽  
Jaber Ahmed ◽  
Nicholas J McNally
Keyword(s):  
Biomedical Research ◽  
Public Involvement ◽  
Good Practice ◽  
Training Programme ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Major Research ◽  
The Public ◽  
The Uk ◽  
The Impact

ObjectivesTo design, deliver and evaluate a programme of training workshops for biomedical researchers aimed at building confidence and skills in actively involving patients and the public (PPI) in research.DesignA bespoke programme of training workshops in PPI aimed at researchers.SettingA large National Institute for Health Research Biomedical Research Centre in London and several partner organisations.Participants721 scientists, clinicians and research managers attending dedicated training in PPI at a major London NHS (National Health Service)–university partnership.InterventionsA programme of 72 training workshops, designed to build practical skills and confidence for researchers working with patients and the public in research, was delivered at a major research-active NHS:university partnership. An iterative approach was taken to the programme, with the content of the workshops continually reviewed and refreshed to respond to the needs of researchers. Surveys before, immediately following and 6 months after training investigated the impact on researchers’ confidence and skills in PPI work, and the kind of PPI they subsequently carried out.ResultsTraining brought about immediate marked increases in researchers’ self-reported confidence to carry out PPI activities within their research, and in their knowledge of good practice. The evaluation indicates that workshop attendees were more likely to involve patients in their research following training. Researchers tended to involve patients and the public in a range of areas, including input to study design and patient information, in particular.ConclusionsWhen positioned within a broader organisational strategy for PPI in research, such training has an important role to play in progressing PPI in a major research partnership. Training appeared to provide the confidence needed to carry out PPI which enabled further development of confidence and skills. Involving researchers who have attended the training in the ongoing development of the programme and bringing in patients to the training programme are key next steps.

scholarly journals “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

2019 ◽  
Vol 3 ◽  
pp. 6 ◽  
Author(s):  
Jessica Stockdale ◽  
Jackie Cassell ◽  
Elizabeth Ford
Keyword(s):  
Common Good ◽  
Public Attitudes ◽  
Good Practice ◽  
Patient Data ◽  
Service Planning ◽  
Biomedical Ethics ◽  
Public Understanding ◽  
Framework Analysis ◽  
The Public ◽  
Public Views

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and privacy debates.Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis.Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data.Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data

scholarly journals Challenges and opportunities for involving patients and the public in acute antimicrobial medicine development research: an interview study

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e024918 ◽  
Author(s):  
Andy Gibson ◽  
Michele Kok ◽  
David Evans ◽  
Sally Grier ◽  
Alasdair MacGowan
Keyword(s):  
Development Process ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Interview Study ◽  
Development Research ◽  
The Public ◽  
Principal Investigators ◽  
Development Life Cycle ◽  
Challenges And Opportunities ◽  
Potential Benefits

ObjectivesTo explore what approaches to patient and public involvement (PPI) in antimicrobial medicines development are currently being used, what the impacts of PPI are on antimicrobial medicines development and what the barriers are to its implementation.DesignInterview study.SettingAntimicrobial medicines development research.ParticipantsPrincipal investigators known to have led studies involving PPI or expressed an interest in PPI.ResultsThere is very little published work on PPI in antimicrobial research. Individual interviewees expressed scepticism about the contribution that PPI could make to different stages of the medicines development life cycle but collectively identified a range of potential benefits of PPI covering most stages of the medicines development process.ConclusionsA major issue in developing PPI in antimicrobial medicines development research will be in overcoming the view that, at best, PPI has only a marginal contribution to make in this area of research. The findings from this study, although mixed, suggest that well-designed PPI has an untapped potential to enhance antimicrobial research.

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 Sexually transmitted infection (STI) research priority-setting: a two-stage study including the perspectives of patients, the public, clinicians and stakeholders

2021 ◽  
pp. sextrans-2021-055054
Author(s):  
Hannah Louise Browne ◽  
Emily Clarke ◽  
Angela I Obasi
Keyword(s):  
Priority Setting ◽  
Public Involvement ◽  
Research Priorities ◽  
Public Understanding ◽  
Health Clinic ◽  
Rapid Diagnostics ◽  
Two Stage ◽  
Transmitted Infection ◽  
The Public ◽  
Research Priority

ObjectivesPatient and public involvement (PPI) in research priority-setting remains limited, especially for non-HIV STI. We identify and compare the top 10 patient and public STI research priorities with those of clinicians and STI stakeholders.MethodsThis two-stage study was conducted in May–August 2019. First, STI research priorities were canvassed through qualitative questionnaires issued to all patients attending a large sexual health clinic, all clinicians in region-wide mailing lists, all stakeholders identified through existing networks and the Charity Commission database, and to the Liverpool public. Raw responses were organised by theme into a shortlist of 25. In stage 2, these were ranked through priority-setting activities by telephone with patients and the public (n=8) and some clinicians (n=3), and in two workshops with clinicians (n=26) and stakeholders (n=5), respectively. The top 10 priorities were compared.ResultsOf 373 surveys submitted, 106 were analysed (83 patient and public; 23 clinician and stakeholder). Exclusions included lack of completion and responses out of scope. Among patient and public respondents, 55% (n=46) were aged 18–24 years, 51% (n=42) identified as heterosexual women and 23% (n=19) as men who have sex with men. Clinicians included all cadres; stakeholders were academics, commissioners and third sector representatives. In stage 2, 4 of 10 themes (STI education, targeted services for high-risk groups, antibiotic resistance and counselling for those with STI) were prioritised by all. Remote STI services and rapid diagnostics also ranked highly but the rationale differed between groups.ConclusionThis is the first non-HIV STI research priority-setting exercise to be reported in the UK. It identifies overlaps and differences between public and provider concerns, highlights gaps in the public understanding of STI research, and shows how PPI can promote research responsive to the concerns of both those who use and deliver services.

scholarly journals An Analysis of the Ethics Infrastructure and Ethical Climate in Slovenian Public Administration

2016 ◽  
Vol 9 (2) ◽  
pp. 147-164
Author(s):  
Janez Stare ◽  
Maja Klun
Keyword(s):  
Public Administration ◽  
Ethical Climate ◽  
Public Involvement ◽  
Good Practice ◽  
Ethical Behaviour ◽  
Public And Private ◽  
The Public ◽  
Ethical Climates ◽  
Basic Goal ◽  
High Degree

Abstract In consideration of the fact that public administrations worldwide face a number of challenges, many governments are dedicated to improving the ethical climate in public administrations. The same issue is also the focus of the attention of many transnational associations. The basic goal is to ensure the development of comparable ethical climates, ethical behaviour in different public administrations and to develop comparable, suitable ethics infrastructures to enable this. Modern public administrations must bring ethical conduct to the fore and resist unethical behaviour. There are different ideas on how to build ethics infrastructures in public administrations, and examples of good practice that could facilitate the development of such infrastructures are found in the public and private sectors of different countries. In this paper, we connect ethics infrastructures and ethical climates. The evaluation of Slovenia’s ethics infrastructures is based on the framework prepared by the OECD, using its questionnaire developed by Victor and Cullen. The results show that there is no general relationship between ethics infrastructures and ethical climates in public administrations. Nevertheless, some determinants of ethics infrastructures correlate to a high degree to the ethical climate, the strongest impact on ethics climates being the ethical infrastructure’s determinant “public involvement and scrutiny”.

The rationale and design of public involvement in health-funding decision making: focus groups with the Canadian public

2020 ◽  
Vol 36 (6) ◽  
pp. 592-598
Author(s):  
Edilene Lopes ◽  
Jackie Street ◽  
Tania Stafinski ◽  
Tracy Merlin ◽  
Drew Carter
Keyword(s):  
Decision Making ◽  
Focus Groups ◽  
Policy Development ◽  
Public Involvement ◽  
Public Understanding ◽  
Funding Decision ◽  
The Public ◽  
Health Technologies ◽  
Advantages And Disadvantages ◽  
Health Funding

BackgroundWorldwide, governments employ health technology assessment (HTA) in healthcare funding decision making. Requests to include public perspectives in this are increasing, with the idea being that the public can identify social values to guide policy development, increasing the transparency and accountability of government decision making.ObjectiveTo understand the perspectives of the Canadian public on the rationale and design of public involvement in HTA.DesignA demographically representative sample of residents of a Canadian province was selected to take part in two sets of two focus groups (sixteen people for the first set and twenty for the second set).ResultsParticipants were suspicious of the interests driving various stakeholders involved in HTA. They saw the public as uniquely impartial though also lacking knowledge about health technologies. Participants were also suspicious of personal biases and commended mechanisms to reduce their impact. Participants suggested various involvement methods, such as focus groups, citizens' juries and surveys, noting advantages and disadvantages belonging to each and commending a combination.Discussion and conclusionsWe identified a lack of public understanding of how decisions are made and distrust concerning whose interests and values are being considered. Public involvement was seen as a way of providing information to the public and ascertaining their views and values. Participants suggested that public involvement should employ a mixed-methods strategy to support informed debate and participation of a large number of people.

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