Engagement of patients and the public in personalised prevention in Europe using genomic information: a scoping review.

Introduction: Personalised prevention using genomic information requires active involvement from patients and the public, who should be well-informed and empowered to make healthcare decisions that reflect their personal values. We aimed to map engagement practises, and assess the extent and types of engagement methods used in the field of personalised prevention of common chronic conditions using genomic information. Methods: A scoping review on selected literature (in Medline, Embase, Scopus, Web of Science, APA PsycINFO, and IBSS) from 2015 to 2023 was performed. Articles included described practises of patient and public engagement in personalised prevention and genomics conducted in Europe focusing on cancer, cardiovascular diseases and neurodegenerative disorders. Engagement was explored based on grouping practises across the domains of care, research, education, and governance. Results: A total of 23 articles describing 23 engagement practises were selected. Analysis revealed diverse engagement levels, the majority falling into the low to medium engagement category, and showing mainly unidirectional methods of engagement, especially consultation. Most engagement activities related to cancer, and none to neurodegenerative disorders. Most publications appeared in the care domain, followed by the research domain, a combination of research and care, and a combination of governance and education. Conclusion: These results suggest that most practises to engage patients and public in personalised prevention using genomic information appear to have lower levels of engagement. Elaborating on and implementing practises that engage and empower patients and the public at all levels of the engagement spectrum and for all chronic diseases is needed, fostering a more inclusive and participatory approach to personalised prevention.

Combining postgraduate research training, public engagement, and primary school science education-a Superbugs Master (MSc) class.

Since 2018, the 'Superbugs' initiative at Cardiff University (United Kingdom) has been delivering projects that take a research-driven approach to public engagement, involving rigorous evaluation of the methodologies of delivery and the mechanics of communication. The overall aim of Superbugs is to raise awareness and improve public knowledge of microbiology, infection and antimicrobial resistance (AMR). In the present project, four postgraduate students were recruited to undertake research projects as part of their Master of Science (MSc) studies. After a period of literature appraisals, the students chose to focus on the topic of personal and food hygiene and were tasked with collecting information on effective strategies for educating young children. Taking advantage of a focus group of primary school teachers, the students then designed evidence-informed educational activities and the evaluation strategies by which the impact of these would be assessed. A pilot delivery of these activities was carried out in a community setting at a local public library, before final delivery as part of a school outreach workshop. The MSc students produced three new elements of educational material; a story book, a treasure hunt and an interactive card game, primarily built around the concepts of challenge and gamification. Feedback collected from primary school pupils aged 6-7 years old and teachers indicated that the activities developed were successful in both being engaging to young people and resulting in an improved knowledge on the chosen topics. Taken together, we present evidence that postgraduate research training, underpinned by active and service learning, represents a valid and effective way of delivering impactful public engagement. In turn, the experience holds benefit for the students not only in terms of their academic study and core scientific skills, but also their wider appreciation and confidence in being effective engagers and science communicators.

Barriers and drivers of public engagement in palliative care, Scoping review.

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.

Building public engagement and access to palliative care and advance care planning: a qualitative study.

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

It is time to update sun safety campaigns to recognise population diversity: Findings from two citizens' juries in Australia.

ISSUE ADDRESSED: While the links between sun exposure and skin cancer are well known, the benefits of sun exposure, particularly as a source of vitamin D, are less well known. This paper reports on a deliberative study exploring public perspectives about sun exposure harms and benefits. METHODS: Two citizens' juries were conducted in Brisbane and Adelaide to consider questions about sun exposure, vitamin D and health promotion. Members of the general population (jurors) listened to evidence from expert witnesses about the harms and benefits of sun exposure. Most witness sessions extended for 60 min, with 6 sessions over 2 days. At each citizens' jury, jurors were asked to listen to expert testimony, consider the evidence and make policy recommendations. The planning and design of the citizens' juries were informed by well-established citizens' jury methods. RESULTS: Jurors proposed that Australia needs improved public information about the harms and benefits of sun exposure. They argued for information that supports personal decision-making that accounts for differences in skin tone and geographical region. Jurors agreed that Australia needs an updated sun safety campaign that reflects new research and addresses diversity. A one-size-fits-all approach to sun protection may no longer be appropriate. CONCLUSIONS: While a new campaign should address both harms and benefits, jurors felt the need for skin cancer prevention outweighs the desirability of generating vitamin D through sun exposure. More nuanced public health messages are needed, which balance the need for skin protection and vitamin D, and acknowledge the diversity of Australia's population. SO WHAT?: Previous research studies are typically siloed into the separate areas of vitamin D or skin cancer research. This study incorporated both topics and pooled the views of participants in two citizens' juries who agreed on the need for improved information about the harms and benefits of sun exposure to reflect a modern Australian population.

How do members of the public expect to use variants of uncertain significance in their health care? A population-based survey.

PURPOSE: Genomic sequencing can generate complex results, including variants of uncertain significance (VUS). In general, VUS should not inform clinical decision-making. This study aimed to assess the public's expected management of VUS. METHODS: An online, hypothetical survey was conducted among members of the Canadian public preceded by an educational video. Participants were randomized to 1 of 2 arms, VUS or pathogenic variant in a colorectal cancer gene, and asked which types of health services they expected to use for this result. Expected health service use was compared between randomization arms, and associations between participants' sociodemographic characteristics, attitudes, and medical history were explored. RESULTS: Among 1003 respondents (completion rate 60%), more participants expected to use each type of health service for a pathogenic variant than for a VUS. However, a considerable proportion of participants expected to request monitoring (73.4%) and consult health care providers (60.9%) for a VUS. There was evidence to support associations between expectation to use health services for a VUS with family history of genetic disease, family history of cancer, education, and attitudes toward health care and technology. CONCLUSION: Many participants expected to use health services for a VUS in a colorectal cancer predisposition gene, suggesting a potential disconnect between patients' expectations for VUS management and guideline-recommended care.

'Fight the parasite': raising awareness of cystic echinococcosis in primary school children in endemic countries.

BACKGROUND: Cystic echinococcosis (CE) is a widespread zoonosis and a significant economic concern and cause of morbidity in humans. A scarcity of education on the sources of CE infection and containment measures is considered to be a key factor responsible for persistent transmission within communities. Recently, edutainment approaches have captured the attention of health education (HE) professionals due to the benefits of integrating cognitive and emotional learning processes. METHODS: A study was carried out in Sardinia, Italy, between 2020 and 2022, amid the SARS-Covid-19 pandemic. The project, designed to involve primary school children (via remote or face-to-face learning depending on the evolving Covid-19 containment measures) consisted of four distinct phases: (i) creation of material for school children and teachers focused on cystic echinococcosis; (ii) pre-intervention evaluation of CE knowledge (i.e. True False Don't Know [TFD] pre-intervention questionnaire based on CE-related knowledge and practices); (iii) edutainment activity (e.g. interactive lessons enhanced by the comic booklet and the "Fight the parasite" cartoon video, hands-on educational activities and drawing activities on CE); and (iv) post-intervention evaluation of CE knowledge (via TFD post-intervention questionnaire [same questionnaire as used for the pre-intervention assessment] on CE-related knowledge and practices) and on-site edutainment tour in primary schools taking part to the project. RESULTS: The percentage of correct answers increased from 65% for the questionnaire administered pre-intervention to 87.9% for the same questionnaire administered post-intervention (χ2 = 648.12, df = 1, P < 0.0001), while the percentage of uncertain answers (i.e. 'I don't know') decreased from 23% pre-intervention to 5% post-intervention (χ2 = 603.44, df = 1, P < 0.0001). These differences indicate a significantly enhanced understanding of CE among participating school children after the intervention. CONCLUSIONS: The results of the present survey indicate that the use of digital educational tools, the use of video animations as a model for science communication, as well as other participatory teaching methods, enabled children to retain key knowledge of the routes of CE transmission and ways to prevent it.

Testing a deliberative democracy method with citizens of African ancestry to weigh pros and cons of targeted screening for hereditary breast and ovarian cancer risk.

Background: Democratic deliberation (DD), a strategy to foster co-learning among researchers and communities, could be applied to gain informed public input on health policies relating to genomic translation. Purpose: We evaluated the quality of DD for gaining informed community perspectives regarding targeting communities of African Ancestry (AAn) for Hereditary Breast and Ovarian Cancer (HBOC) screening in Georgia. Methods: We audiotaped a 2.5 day conference conducted via zoom in March 2021 to examine indicators of deliberation quality based on three principles: (1) inclusivity (diverse viewpoints based on participants' demographics, cancer history, and civic engagement), (2) consideration of factual information (balanced and unbiased expert testimonies, participant perceived helpfulness), and (3) deliberation (speaking opportunities, adoption of a societal perspective on the issue, reasoned justification of ideas, and participant satisfaction). Results: We recruited 24 participants who reflected the diversity of views and life experiences of citizens of AAn living in Georgia. The expert testimony development process we undertook for creating balanced factual information was endorsed by experts' feedback. Deliberation process evaluation showed that while participation varied (average number of statements = 24, range: 3-62), all participants contributed. Participants were able to apply expert information and take a societal perspective to deliberate on the pros and cons of targeting individuals of AAn for HBOC screening in Georgia. Conclusions: The rigorous process of public engagement using deliberative democracy approach can successfully engage a citizenry with diverse and well-informed views, do so in a relatively short time frame and yield perspectives based on high quality discussion.

Public Interest Group on Cancer Research: a successful patient-researcher partnership in Newfoundland and Labrador.

BACKGROUND: Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities. OBJECTIVE: Our objective was to create a public interest group through an academic-community partnership focused on cancer research and public engagement. METHODS: A purposeful recruitment process was implemented to ensure a diverse and inclusive group. The group meets virtually and communicates by email. The group's activities focus on identifying the needs, priorities, and interests of cancer-affected individuals in the province; consultations; and designing research projects and public outreach activities together. Comprehensive meeting minutes are kept and used to distill discussion points. The work of the group is disseminated through a variety of channels. RESULTS: The public interest group includes 12 cancer patient and family member representatives, in addition to researchers. Discussions by the interest group identified key themes related to: (1) equity issues and regional disparity in provincial oncocare; (2) information needs; (3) need for patient empowerment and public understanding; and (4) family member and partner needs and experiences. To date, the group has co-designed a cancer research proposal and a public engagement/outreach activity. The group also provides consultations on cancer-related projects/public engagement activities and members act as patient partners in specific research and public engagement proposals. The group evolves over time, and increasingly advocates on behalf of cancer patients and families. Retention and satisfaction of the public partners with group activities have been high. The group's work and findings are disseminated to the Provincial Cancer Care Program, as well as to public and scientific stakeholders through local media, academic conferences and presentations, and a dedicated website. CONCLUSION: Public Interest Group on Cancer Research represents a highly successful patient-researcher partnership in oncology. It designs meaningful and patient-oriented studies and outreach activities in cancer. It also elevates and widely supports cancer patient and family voice.

Cancer patients and their family members have unique and lived experience with the condition. Therefore, collaborating with them is important in cancer science. We aimed to create such a collaboration in Newfoundland and Labrador, Canada. In 2021, we successfully formed our diverse collaborative group. Currently, our group includes 12 public representatives. We meet online and discuss matters important to members. We also design studies and events together. Our discussions have identified four topics that need further research and policy changes such as information needs and unique needs of caregivers and family members. Our activities expand over time. For example, lately we started to advocate for other cancer patients and families. In conclusion, we formed a successful cancer patient, family member, and researcher collaborative group. Our work informs the public, healthcare systems, and scientists on important cancer related matters.

Current state of social media utilization in neurosurgery amongst European Association of Neurosurgical Societies (EANS) member countries.

BACKGROUND: Social Media (SoMe) is becoming increasingly used in the medical community, and its use has been related with academic productivity. However, utilization of SoMe in the European neurosurgical community has not been assessed systematically. METHODS: An online search was undertaken to discover SoMe accounts of (1) national and related neurosurgical societies listed on the EANS website, (2) neurosurgical journals present on EANS website, (3) neurosurgery centers within EANS member countries, as listed on their website. SoMe accounts of Facebook, Twitter, YouTube, and Instagram were searched for journals and societies, and Twitter, Instagram, and Facebook for neurosurgery departments. The number of likes/followers/subscribers was recorded. RESULTS: Five (31%) neurosurgery journals had a SoMe presence. The highest number of followers, likes, and tweets was found for JNNP, and Journal of Neurological Surgery Part B had the most subscribers and video views. SoMe usage was identified for 11 national (28.2%) and 2 multi-national neurosurgical societies. From these, the French Society of Neurosurgery had the largest number of Facebook followers (> 2800) and Likes (> 2700), the Society of British Neurological Surgeons had the largest number of Twitter followers (> 2850), whereas EANS overall had the most followers on Twitter > 5100 and Facebook > 5450. A total of 87 SoMe neurosurgery center accounts were found on either Facebook, Instagram or Twitter, for 64 of 1000 centers (6.4%) in 22 of 40 different countries (55%). Of these 67% (n = 43/64) arose from 6 countries (England, Germany, Italy, Romania, Turkey, Ukraine). There were more Facebook accounts (n = 42) than Instagram accounts (n = 23) or Twitter accounts (n = 22). CONCLUSION: SoMe use amongst neurosurgical societies and departments in Europe is very limited. From our perspective, explanations are lacking for the correlated numbers to the market shares of SoMe in the respective countries. Further research, including a survey, to follow up on this important topic should be undertaken among EANS members.

ReIMAGINE: a prostate cancer research consortium with added value through its patient and public involvement and engagement.

BACKGROUND: ReIMAGINE aims to improve the current prostate specific antigen (PSA)/biopsy risk stratification for prostate cancer (PCa) and develop a new image-based method (with biomarkers) for diagnosing high/low risk PCa in men. ReIMAGINE's varied patient and public involvement (PPI) and engagement (PE) strategy maximises the impact of its scientific output by informing and shaping the different stages of research. AIMS: Through including the voice of patients and the public, the ReIMAGINE Consortium aims to translate these different perspectives into the design and implementation process. This will improve the overall quality of the research by: reflecting the needs and priorities of patients and the public, ensuring methods and procedures are feasible and appropriate ensuring information is relevant and accessible to those being recruited to the study identifying dissemination channels relevant to patients/the public and developing outputs that are accessible to a lay audience With support from our patient/user groups, the ReIMAGINE Consortium aims to improve our ability to derive prognostic information and allocate men to the most appropriate and effective therapies, using a novel image-based risk stratification with investigation of non-imaging biomarkers. FINDINGS: We have been working with patients and the public from initiation of the project to ensure that the research is relevant to men and their families. Our PPI Sub-Committee, led by a PCa patient, has been involved in our dissemination strategy, outreach activities, and study design recommendations. For example, the sub-committee have developed a variety of informative videos relevant and accessible to those being recruited, and organised multiple online research engagement events that are accessible to a lay audience. As quoted by one of the study participants, "the more we present the benefits and opportunities to patients and the public, the more research commitment we obtain, and the sooner critical clinical questions such as PCa diagnostics will be addressed".

One in eight men will be diagnosed with prostate cancer (PCa). Most will not die of it, but our ability to identify those men whose cancer poses the greatest threat to life has, thus far, been poor. Some men are diagnosed with small cancers which will never cause them a problem, some will have treatment which is unnecessary, others will have their cancers missed, and others will be misclassified as either having low risk cancer and will therefore miss out on the appropriate treatment, or told their cancer is high risk and have unnecessary treatment. Nowhere else in modern medicine are these errors of over-diagnosis, over-treatment, missed-diagnoses, and poor risk-stratification more common. The ReIMAGINE Consortium has been developed to undertake discoveries that will correct these four key errors in the PCa diagnostic pathway. We will investigate how to best identify which men have, or will develop, aggressive prostate cancer using imaging combined with advanced biomarker analyses of blood and urine (i.e., OMICs technologies such as whole genome sequencing, targeted sequencing (e.g.: = , methylation). We will achieve this by building on established partnerships between patients, advocacy organisations, clinicians, imaging experts, molecular biologists, methodologists, and a broad range of industrial partners.The Patient and Public Involvement (PPI) sub-committee is an integral part of the study workflow, contributing to study design and recruitment, results analysis, and dissemination. The committee, led by a funded PPI co-ordinator and a patient chair, have given invaluable insight into the study modifications due to COVID-19 restrictions.

Patient-public engagement strategies for health system improvement in sub-Saharan Africa: a systematic scoping review.

BACKGROUND: Actively involving patients and communities in health decisions can improve both peoples' health and the health system. One key strategy is Patient-Public Engagement (PPE). This scoping review aims to identify and describe PPE research in Sub-Saharan Africa; systematically map research to theories of PPE; and identify knowledge gaps to inform future research and PPE development. METHODS: The review followed guidelines for conducting and reporting scoping reviews. A systematic search of peer-reviewed English language literature published between January 1999 and December 2019 was conducted on Scopus, Medline (Ovid), CINAHL and Embase databases. Independent full text screening by three reviewers followed title and abstract screening. Using a thematic framework synthesis, eligible studies were mapped onto an engagement continuum and health system level matrix to assess the current focus of PPE in Sub-Saharan Africa. RESULTS: Initially 1948 articles were identified, but 18 from 10 Sub-Saharan African countries were eligible for the final synthesis. Five PPE strategies implemented were: 1) traditional leadership support, 2) community advisory boards, 3) community education and sensitisation, 4) community health volunteers/workers, and 5) embedding PPE within existing community structures. PPE initiatives were located at either the 'involvement' or 'consultation' stages of the engagement continuum, rather than higher-level engagement. Most PPE studies were at the 'service design' level of the health system or were focused on engagement in health research. No identified studies reported investigating PPE at the 'individual treatment' or 'macro policy/strategic' level. CONCLUSION: This review has successfully identified and evaluated key PPE strategies and their focus on improving health systems in Sub-Saharan Africa. PPE in Sub-Saharan Africa was characterised by tokenism rather than participation. PPE implementation activities are currently concentrated at the 'service design' or health research levels. Investigation of PPE at all the health system levels is required, including prioritising patient/community preferences for health system improvement.

IRPA practical guidance for engagement with the public on radiation and risk.

The International Radiation Protection Association, IRPA, promotes the worldwide enhancement of professional competence, radiation protection (RP) culture and practice by providing benchmarks of good practice, as well as encouraging the application of the highest standards of professional conduct, skills and knowledge for the benefit of individuals and society. Enhancing public understanding of radiation and risk is highlighted by experiences from past emergencies, including the accident at Tokyo Electric Power Company's (TEPCO) Fukushima Daiichi Nuclear Power Plant in 2011 and the following post-disaster recovery, as one of the most important challenges, and this challenge is common across almost all public interfaces regarding radiation and risk. To this end IRPA has been continuing a Task Group activity for Public Understanding since 2013. After a series of workshops in various regions of the world, the IRPA draft guidance was developed and issued for consultation of the Associate Societies in 2019. Through these processes, IRPA received a lot of helpful comments and suggestions. IRPA finally published 'Practical Guidance for Engagement with the Public on Radiation and Risk' on the IRPA website in October 2020. The objective of the guidance is two-fold. Firstly, it is to enthuse all of us in our profession to become more active public advocates for RP. Secondly, it is to provide information, experiences and techniques to help us to become more effective and comfortable in this challenging task. This paper provides a key summary of the published IRPA guidance.

Nights at the museum: integrated arts and microbiology public engagement events enhance understanding of science whilst increasing community diversity and inclusion.

This study uses integrated art and science events to explore a blended approach in improving public understanding of current scientific topics and widening participation within the local community. The events were a Halloween-inspired microbiology-themed series of interactive exhibitions hosted within a national museum as part of an existing series of adult education evenings. A representative sample of 102 mixed methods exit questionnaires, based on determining (i) audience diversity and (ii) understanding of scientific topics, were analysed by qualitative and quantitative approaches, and a post-attendance focus group was carried out to determine longer term impact of the event. Participants were grouped as 'Science', 'Arts', 'Both' or 'Neither', according to their past experience and engagement. These events welcomed more participants from the Arts and Neither subsections hence engaging a group of people who would not usually visit science public engagement events or comparative events hosted in traditional academic settings, highlighting the importance of venue choice in reaching new audiences and widening participation. An increase in perceived understanding of science was observed by all groups of participants with reported enjoyment focused around the science talks, presentations and blended art-science activities. A putative impact in science capital is observed with participants reporting an increased likelihood of attending science events in the future. Furthermore, increased discussion and awareness of science in society is evidenced by participants. Blended art and microbiology exhibitions enhance the accessibly of science public engagement events and is likely to increase science capital; the impact of this on cognitive polyphasia is also discussed.

Improving Neurosurgery Education Using Social Media Case-Based Discussions: A Pilot Study.

BACKGROUND: The increasing shift toward a more generalized medical undergraduate curriculum has led to limited exposure to subspecialties, including neurosurgery. The lack of standardized teaching may result in insufficient coverage of core learning outcomes. Social media (SoMe) in medical education are becoming an increasingly accepted and popular way for students to meet learning objectives outside formal medical school teaching. We delivered a series of case-based discussions (CbDs) over SoMe to attempt to meet core learning needs in neurosurgery and determine whether SoMe-based CbDs were an acceptable method of education. METHODS: Twitter was used as a medium to host 9 CbDs pertaining to common neurosurgical conditions in practice. A sequence of informative and interactive tweets were formulated before live CbDs and tweeted in progressive order. Demographic data and participant feedback were collected. RESULTS: A total of 277 participants were recorded across 9 CbDs, with 654,584 impressions generated. Feedback responses were received from 135 participants (48.7%). Participants indicated an increase of 77% in their level of knowledge after participating. Of participants, 57% (n = 77) had previous CbD experience as part of traditional medical education, with 62% (n = 84) receiving a form of medical education previously through SoMe. All participants believed that the CbDs objectives were met and would attend future sessions. Of participants, 99% (n = 134) indicated that their expectations were met. CONCLUSIONS: SoMe has been shown to be a favorable and feasible medium to host live, text-based interactive CbDs. SoMe is a useful tool for teaching undergraduate neurosurgery and is easily translatable to all domains of medicine and surgery.

Integrating Patient-Centred Research in the Canadian Cancer Trials Group.

The inclusion of patients as partners in research is a key link in the delivery of patient-centred care in healthcare systems. Despite genuine intentions to engage patients in authentic partnerships, efforts can result in tokenism and benefits of engagement are missed. Understanding how patient engagement provides value along the research to patient-care continuum and how to best engage patients as partners are key. This document describes the method taken by the Canadian Cancer Trials Group (CCTG) to implement meaningful patient centricity and engagement and the benefits realized. Originally, Patient Representatives were recruited and assigned to CCTG Committees. Lacking guidance, the role was one of a passive meeting attendee. A gap analysis identified a need for clarity in expectations, understanding of the linkage to CCTG strategic objectives, and supporting tools and training. A plan was developed and successfully implemented in three phases, each phase building on the previous, the level of patient engagement simultaneously changing from "Inform" to "Involve" to "Collaborate" on the International Association for Public Participation (IAP2) scale. Results include significant contributions to increased patient accrual in CCTG trials, to increased CCTG grant funding, as well as recognition and adoption of these practices within Canada and internationally.

Patient-public engagement interventions for health system improvement in Sub-Saharan Africa: A systematic scoping review protocol.

BACKGROUND: Research has found health system improvement cannot be achieved without continuously engaging patients, their families and all stakeholders in the design, management and delivery of health care services. Following the Alma Ata declaration on Primary Health Care in 1978, the focus of health system improvement has tended to shift from physician or hospital-centric approaches to a more democratic vision of engaging the public and/or patients in the commissioning, planning, organisation, operation and control of the health care system. Thus, patient-public engagement (PPE) has become an important tool in health system improvement particularly for countries with poor health outcomes including countries in sub-Saharan Africa which carries an estimated 24% of the global burden of diseases in both human and financial costs. The aim of this scoping review is to describe and systematically map PPE research in sub-Saharan Africa, and then to synthesise this research in relation to key theories of PPE, identify the key drivers and barriers of PPE and to identify the knowledge gaps that may usefully be addressed by future research. METHODS: This scoping review will follow Arksey and O'Malley's best guidelines for conducting scoping reviews and also follow the standard guidelines for reporting using the Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews checklist. A systematic search of peer-reviewed English language literature published between January 1999 and December 2019 will be conducted on four databases: Scopus, CINAHL, Medline (Ovid) and Embase. The initial screening of titles and abstracts will be undertaken independently by two reviewers, followed by full text screening involving three independent reviewers. A thematic framework synthesis will be employed in the analysis of data to identify the various PPE interventions, and outcomes mapped to a framework of engagement continuum to understand its overall effect on health system improvement in sub-Saharan Africa. DISCUSSION: To our knowledge, this scoping review will be the first to systematically investigate PPE interventions implemented across sub-Saharan Africa, map the outcomes of identified interventions to a framework of engagement continuum and to understand its overall effect on health system improvement. Findings of this review will be published in an open-access peer review journal and disseminated at scientific conferences.