Multi-stakeholder Consultation Research Articles

Barriers to Personalised Prevention: Perspectives from a Multi-Stakeholder Consultation

Abstract Background The high and increasing burden of Non-Communicable Diseases (NCDs) demands a healthcare shift towards prevention. Personalised preventive interventions (PPIs) that consider biological, sociocultural, environmental, and behavioural characteristics of individuals, are not as widely adopted as other personalised medicine approaches. To identify the main barriers and gaps that are hindering the adoption of PPIs in healthcare systems, we consulted a wide range of European stakeholders, including health professionals, policy makers, citizens and patients, and researchers. Methods The consultation process included experts’ interviews and an online survey, taking place over 10 months in 2023/2024. Interviews were analysed using qualitative Thematic Analysis. The online survey development was based on the barriers identified by the interviewed experts, complemented with findings from the literature. Respondents scored their level of agreement/disagreement using a 6-point Likert scale. Descriptive statistical analysis was performed. Results A total of 26 semi-structured interviews and 270 complete surveys were obtained. Overall, the main barriers highlighted were: 1) Health systems strategies are geared towards curative care and not prevention. 2) Awareness and understanding of the concept of PPIs is low. 3) There is a lack of basic and life-long training for health professionals on PPIs; 4) There is insufficient evidence for PPIs to raise the necessary policymakers’ interest. 5) Health literacy of citizens and patients is low. 6) There is insufficient prevention research, evidence of cost-efficiency and regulation procedures for translation into health practice. Conclusions Identified barriers are interconnected and the challenges extend beyond prevention to personalized medicine interventions. Collaborative efforts are needed to elevate visibility and engage stakeholders, facilitating integration of PPIs into healthcare systems for widespread adoption. Key messages • This consultation offers valuable insights on challenges that need to be addressed to enable the integration of PPIs into healthcare and reduce the burden of NCDs. • Investments in disease prevention and PPIs should stand as a global key priority.

Novel approaches to enable equitable access to monoclonal antibodies in low- and middle-income countries.

Monoclonal antibodies (mAbs) are revolutionizing management of non-communicable diseases in high-income countries and are increasingly being advanced for a range of infectious diseases (IDs). However, access to existing mAbs is limited in low- and middle-income countries (LMICs), and investment in developing fit-for-purpose mAbs for IDs that disproportionately affect LMICs has been limited. Underlying these access barriers are systemic challenges, including a lack of commercial incentives to target LMIC markets and complexity in manufacturing and regulatory processes. Novel strategies are needed to overcome systemic access barriers for mAbs. We outline key areas where new approaches could address these barriers, based on a multistakeholder consultation in March 2023. Three disease-market archetypes are identified to guide thinking about business models tailored to different contexts. New business models are needed to incentivize development and manufacturing of ID mAbs and to ensure mAbs are optimized with a target product profile and cost of goods that enable use in diverse LMIC settings. Lessons can be applied from voluntary licensing strategies and product development partnerships that have shown success in catalysing development and affordable supply for a range of infectious diseases. Technology transfer will be key to expand LMIC research and manufacturing capacity and to enable sustainable and diversified supply. Improved market intelligence, demand aggregation mechanisms, and portfolio-based manufacturing models could be used to de-risk commercial investment and establish a sustainable manufacturing ecosystem for affordable mAbs. Novel regulatory approaches and robust technology transfer may reduce data requirements and timelines for biosimilar approvals. Trailblazer products, with coordinated "end-to-end" support from funders, can demonstrate proof of concept for pathways to accessible mAbs across a broader range of LMICs. Research funders; local, regional, global health agencies; and, private sector partners should commit to implementing innovative partnerships and end-to-end strategies that enable equitable access to mAbs for infectious diseases in LMICs.

Multi-stakeholder Engagement and Development of a Virtual Care Toolkit for Integrated Guideline-Based Low Back Pain Management

Introduction: The abrupt COVID-19 related healthcare closures across Ontario, Canada resulted in a rapidly growing backlog of patients referred to the Provincial Rapid Access Clinics (RACs) Program, designed to manage patients suffering from unmanageable low back pain (LBP). Left untreated or poorly treated, LBP can lead to a significant burden on patients and the health system. Expeditious implementation of virtual care (VC) became a necessity, however, frontline clinicians identified lack of confidence and experience with LBP-VC. To ensure continuity in patient-centered care, a Toolkit was developed to enable delivery of a standardized guideline-based integrated LBP pathway through VC.
 Aims, Objectives, Theory or Methods: A coordinated in-depth multi-stakeholder engagement process was utilized to address clinicians’ concerns to promote confident adoption of VC. A system-level rapid response approach led through a centralized clinical and digital provincial infrastructure was used for Toolkit development. Toolkit structure, content and refinement was determined through an iterative mix-methods approach undertaken with provincial LBP stakeholders on how best to implement an established evidence-based shared-care LBP clinical pathway through VC. This approach facilitated acceptable strategies for barrier mitigation and enabled optimization to be rapidly developed on a provincial level with necessary resources and guidelines to deliver standardized LBP-VC across Ontario.
 Highlights or Results or Key Findings: Toolkit resources have been adopted across 16 urban and rural regions in Ontario. Engaging front-line clinicians, (including spine surgeons), was critical for active implementation of VC that was safe, effective, and met professional requirements. Stakeholders for operational oversight included government, hospital and regional administrators, and professional colleges and associations. With collaborative provincial leadership, barriers and enablers to LBP-VC were systematically identified. Extensive multi-stakeholder consultation which included patient feedback, provided pragmatic information related to privacy; informed consent; professional standards; regional variations, and clinical and patient barriers and enablers. Emergent themes included technology requirements, administrative processes, educational needs, and professional standards. Four hundred and forty LBP-VC patient satisfaction questionnaires were completed (June 2020-May 2021). Based on a 5-point Likert scale, (5 most positive), overall satisfaction and likelihood of participating again was 4.7/5. Qualitative analysis revealed three themes with VC, importance of human connection, patient-perceived virtual physical examination limitations and VC efficiencies.
 
 Conclusions: A Toolkit enabled a standardized province-wide approach to LBP-VC. Multi-stakeholder engagement was utilized to understand barriers, identify enablers, and ultimately promote patient and provider adoption and confidence with LBP-VC. With collaborative leadership, and extensive engagement, clinical resources and guidelines were developed and implemented province-wide with excellent face-validity based on patient and provider feedback and uptake. 
 Implications for applicability/transferability, sustainability and limitations: There is a need to further assess patient preference for care delivery during normal and non-emergency circumstances (COVID-19). Future directions include validating LBP-VC physical examination findings compared to hands-on assessment. There is also a need to explore cost-effectiveness of LBP-VC at scale; patient-related factors including demographics, satisfaction, preference, and acceptance with LBP-VC; treatment outcomes, including surgical; safety considerations such as security of online platforms, physical patient safety during the assessment; and comparing rate of escalation to surgeon with in-person and virtual assessment.
 

Application of triple bottom line concept to artisanal and small-scale mining activities in Wa East District, Ghana

<p align="justify">The artisanal and small-scale mining (ASM) sector offers a supplementary livelihood strategy to agriculture in northern Ghana, acting as a source of capital to support agriculture. However, the sector has been associated with several adverse environmental and socio-economic consequences, making its sustainability dimensions extremely complex and inconclusive across the literature. This study sought to investigate the dynamics of ASM operations in line with the Triple Bottom Line concept. Specifically, the paper explored the influence of the small-scale mining law and institutional framework on ASM operations, examined the relationship between the economic benefits of ASM and other livelihood activities, and assessed the adverse environmental effects of ASM in the host communities. The research design was a mixed method and cross-sectional survey. Household questionnaires, semi-structured interviews and non-participant observation were the main primary data collection techniques. Secondary data were provided by satellite images sourced from USGS Earth Explorer. They were analysed to determine the land cover types. The results indicate that the relevant regulatory state institutions lag behind their law enforcement duty. The ASM is a lucrative job that provides quick income to the youth. However, ASM activities affect food crop farming and decrease the quantity and quality of vegetation causing variations in land cover. Consequently, the host communities and ASM cooperatives have employed some land reclamation strategies. The study recommends increased government support to the relevant regulatory state institutions to constantly monitor and sanitize the ASM sector. To eradicate illegal mining, the study advocates for multi-stakeholder consultation and action.</p>

The meaning of CPR in the life-world of hospital: perspectives of patients who witnessed CPR and healthcare professionals.

Abstract Funding Acknowledgements Type of funding sources: Other. Main funding source(s): Resuscitation Council (UK) Background Cardiopulmonary resuscitation (CPR) in hospital is a stressful experience for patients who witness it and for the healthcare professionals involved. Limited evidence and guidance exist regarding the experience of witnessing a fellow patient’s CPR. Informed by a systematic review [1] and a multi-stakeholder consultation [2], the WATCH (Witnessing an Attempt of CPR in Hospital) study has explored the lived experiences of hospital patients and healthcare professionals on patient-witnessed CPR with the primary aim of understanding the impact of such an experience [3]. Purpose The purpose of this study was to understand the meaning of CPR in the context of the hospital life-world of patients who witness CPR and of healthcare professionals. Methods The WATCH study used a qualitative descriptive phenomenological design. The lived experiences of 16 witnessing patients admitted to nine clinical wards and of 20 healthcare professionals involved in CPR were explored through in-depth interviews and focus groups conducted in one hospital in the UK. Results Three themes were developed from analysis indicating that, despite a shared understanding of CPR as part of hospital life and as a potential result of emergencies, patients and healthcare professionals had different perspectives of hospital CPR. 1) Unfamiliarity vs Exposure: although patients were aware of CPR, witnessing CPR was often unexpected and traumatic, as many had not experienced it before. Instead, healthcare professionals with previous knowledge and expertise, held an emotional distance and focused on the clinical tasks of CPR. 2) Fiction vs Reality: healthcare professionals considered patients to have unrealistic expectations of CPR, often uninformed and influenced by distorted portrayal of CPR to the lay public through television. Patients acknowledged that witnessing hospital CPR helped their understanding of the reality of it, which differed from their initial idea. 3) Life vs Death: Patients felt disturbed by the presence of a dead body in their room after CPR, whilst daily activities of hospital life were carried out, highlighting a contrast between life and death in the same environment. Finally, healthcare professionals reflected on the meaning of performing CPR as a process to help the ones witnessing it to face and accept the reality of death. Conclusion The WATCH study highlighted that patients and healthcare professionals hold different perspectives of CPR in hospital. Awareness of different perspectives of hospital CPR will help healthcare professionals initiate CPR conversations with hospital patients. Education and accurate information should be offered to hospital patients around CPR to have realistic expectations. Further work is required to guide and support clinical practice around patient-witnessed CPR in hospital.

Open Science for Accelerating the Sustainable Development Goals: Status and Prospects in Asia and the Pacific

Achieving the United Nations Sustainable Development Goals is increasingly challenging due to widening inequality in access to scientific and technological knowledge and resources. With science remaining too discipline based, and policymakers too often science averse, there is a need for greater understanding of the opportunities and challenges of open science for science practitioners, policy makers and communities. Acknowledging that open science can be a powerful tool to reduce inequalities, UNESCO has been supporting the shift to open science. Following global multistakeholder consultation, the UNESCO Recommendation on Open Science was adopted in November 2021, establishing a universal definition, common standards and shared set of values and principles. In 2021, the UNESCO Regional Science Bureau for Asia and the Pacific partnered with the Institute for Study and Development Worldwide on local and national mapping to identify implementation strategies and mechanisms already in place to enable open science in Asia and the Pacific, and to identify what more is needed. Focused on Malaysia, Republic of Korea, Pakistan, Samoa and Uzbekistan, the study showed that while there are many examples of good practice in aspects of open science, none of the focus countries currently has in place all the policies, infrastructure, awareness and capacity building needed. Typically, clear policies on open science have not yet been articulated and funding mechanisms not yet established. Trust is a key pre-requisite for open science. Current inequities in access to open science infrastructure will need to be addressed or implementation may be unbalanced, exacerbating existing inequities at national, regional, and global scales. There are many opportunities to learn from existing efforts toward open science, but there will be no generic model; each country will need to design an open science model and implementation pathway suited to its context. A predominant message from this research was that the convening power of UNESCO should continue to be harnessed to engage countries on open science implementation. Further, those committed to open science will need to work hard, with UNESCO, to democratize science and encourage an ethos of “policy for science, science for policy - science for society and society for science”.

Soil priorities for Italy. A multi-stakeholder consultation, barriers and opportunities for research system

Soil can play a primary role to address key global challenges, such as climate change mitigation and adaptation; ensuring food security and human livelihood; preserving ecosystem services, biodiversity and water quality. Nevertheless, identifying and addressing key soil challenges requires a cross cutting and tailored approach that considers local context and needs. On the other hand, advancing soil science research is essential for bridging the gap between societal needs and state-of-the-art on soil knowledge. This study summarizes the outcomes of multi-stakeholder consultations carried out in Italy with the aim to identify and prioritize the key soil challenges and the main knowledge barriers/gaps that prevent to address and the main opportunities to overcome them. Soil sealing, soil erosion and the losses of soil organic matter were identified as the most relevant soil challenges in the Italian context, as their incidence is already alarming in the country. The study showed that there are many areas of soil research improvement to respond adequately to the existing soil challenges in Italy.

A standardised Phase III clinical trial framework to assess therapeutic interventions for Lassa fever.

BackgroundOnly one recommendation currently exists for the treatment of Lassa fever (LF), which is ribavirin administered in conjunction with supportive care. This recommendation is primarily based on evidence generated from a single clinical trial that was conducted more than 30 years ago–the methodology and results of which have recently come under scrutiny. The requirement for novel therapeutics and reassessment of ribavirin is therefore urgent. However, a significant amount of work now needs to be undertaken to ensure that future trials for LF can be conducted consistently and reliably to facilitate the efficient generation of evidence.MethodologyWe convened a consultation group to establish the position of clinicians and researchers on the core components of future trials. A Core Eligibility Criteria (CEC), Core Case Definition (CCD), Core Outcome Set (COS) and Core Data Variables (CDV) were developed through the process of a multi-stakeholder consultation that took place using a modified-Delphi methodology.ResultsA consensus position was achieved for each aspect of the framework, which accounts for the inclusion of pregnant women and children in future LF clinical trials. The framework consists of 8 core criteria, as well as additional considerations for trial protocols.ConclusionsThis project represents the first step towards delineating the clinical development pathway for new Lassa fever therapeutics, following a period of 40 years without advancement. Future planned projects will bolster the work initiated here to continue the advancement of LF clinical research through a regionally-centred, collaborative methodology, with the aim of delineating a clear pathway through which LF clinical trials can progress efficiently and ensure sustainable investments are made in research capacity at a regional level.

Building a Research Roadmap for Caregiver Innovation: Findings from a Multi-Stakeholder Consultation and Evaluation.

Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions.

Risk-Stratified Pathways for Cancer Survivorship Care: Insights from a Deliberative Multi-Stakeholder Consultation.

Risk-stratified pathways of survivorship care seek to optimize coordination between cancer specialists and primary care physicians based on the whole person needs of the individual. While the principle is supported by leading cancer institutions, translating knowledge to practice confronts a lack of clarity about the meaning of risk stratification, uncertainties around the expectations the model holds for different actors, and health system structures that impede communication and coordination across the care continuum. These barriers must be better understood and addressed to pave the way for future implementation. Recognizing that an innovation is more likely to be adopted when user experience is incorporated into the planning process, a deliberative consultation was held as a preliminary step to developing a pilot project of risk-stratified pathways for patients transitioning from specialized oncology teams to primary care providers. This article presents findings from the deliberative consultation that sought to understand the perspectives of cancer specialists, primary care physicians, oncology nurses, allied professionals, cancer survivors and researchers regarding the following questions: what does a risk stratified model of cancer survivorship care mean to care providers and users? What are the prerequisites for translating risk stratification into practice? What challenges are involved in establishing these prerequisites? The multi-stakeholder consultation provides empirical data to guide actions that support the development of risk-stratified pathways to coordinate survivorship care.

Chronic Kidney Disease of Unknown Etiology in India: What Do We Know and Where We Need to Go

Chronic kidney disease (CKD) not associated with known risk factors has been reported from parts of India and is presumed to be similar to CKD of unknown etiology (CKDu) that has been described from Central America. The reports from India have been fragmented without clear description of the disease phenotype or its determinants. This paper summarizes the current state of knowledge around CKDu in India based on a review of literature, multi-stakeholder consultation, and a survey of Indian nephrologists. We also contacted individual research groups to solicit data. Our findings suggest that that CKDu is reported from most regions in India; however, it is interpreted differently from the phenotype described from Central America and Sri Lanka. The differences include lack of a clear demographic or occupation group, older age of affected participants, and presence of mild hypertension and low-grade proteinuria. Well-designed prospective field studies with appropriate diagnostic workup are needed to establish the disease burden and identify etiologies, along with socioeconomic and health consequences, the intersection with the environment, and the public health response. Community-based research should phenotype the entire CKD population rather than be restricted to cases with presumed CKDu based on predefined criteria. Guidelines are needed for clinical evaluation, referral, management, and harmonization of clinical documentation and health records. More data are needed to support the existence of a unique CKDu phenotype in India.

Quality of Hospital Electronic Health Record (EHR) Data Based on the International Consortium for Health Outcomes Measurement (ICHOM) in Heart Failure: Pilot Data Quality Assessment Study.

BackgroundThere is increasing recognition that health care providers need to focus attention, and be judged against, the impact they have on the health outcomes experienced by patients. The measurement of health outcomes as a routine part of clinical documentation is probably the only scalable way of collecting outcomes evidence, since secondary data collection is expensive and error-prone. However, there is uncertainty about whether routinely collected clinical data within electronic health record (EHR) systems includes the data most relevant to measuring and comparing outcomes and if those items are collected to a good enough data quality to be relied upon for outcomes assessment, since several studies have pointed out significant issues regarding EHR data availability and quality.ObjectiveIn this paper, we first describe a practical approach to data quality assessment of health outcomes, based on a literature review of existing frameworks for quality assessment of health data and multistakeholder consultation. Adopting this approach, we performed a pilot study on a subset of 21 International Consortium for Health Outcomes Measurement (ICHOM) outcomes data items from patients with congestive heart failure.MethodsAll available registries compatible with the diagnosis of heart failure within an EHR data repository of a general hospital (142,345 visits and 12,503 patients) were extracted and mapped to the ICHOM format. We focused our pilot assessment on 5 commonly used data quality dimensions: completeness, correctness, consistency, uniqueness, and temporal stability.ResultsWe found high scores (>95%) for the consistency, completeness, and uniqueness dimensions. Temporal stability analyses showed some changes over time in the reported use of medication to treat heart failure, as well as in the recording of past medical conditions. Finally, the investigation of data correctness suggested several issues concerning the characterization of missing data values. Many of these issues appear to be introduced while mapping the IMASIS-2 relational database contents to the ICHOM format, as the latter requires a level of detail that is not explicitly available in the coded data of an EHR.ConclusionsOverall, results of this pilot study revealed good data quality for the subset of heart failure outcomes collected at the Hospital del Mar. Nevertheless, some important data errors were identified that were caused by fundamentally different data collection practices in routine clinical care versus research, for which the ICHOM standard set was originally developed. To truly examine to what extent hospitals today are able to routinely collect the evidence of their success in achieving good health outcomes, future research would benefit from performing more extensive data quality assessments, including all data items from the ICHOM standards set and across multiple hospitals.

The Impact of COVID-19 in Social Sustainability

The idea of UN Sustainable Development Goals that no one is left behind is gaining higher importance, especially during the pandemic. Despite social sustainability is a complex topic due to the absence of a clear definition and its subjectivity. It relates with existing social problems, where the COVID-19 pandemic has also increased these problems in the food value chain: poor decent working conditions, lack of occupational health and safety at the workplace, forced labor, and intensive hours of work, among others. As half of the world’s workforce is involved in the food industry, the better understanding of its associated value chains in times of pandemic can contribute to improve social sustainable practices. With this aim the current paper identifies and analyzes current challenges and problems linked to social sustainability in times of COVID-19, identifying key actors and potential solutions and recommendations. The research adopts a qualitative and exploratory method applied through the Grounded Theory analysis combining desk research with inputs from a multi-stakeholder consultation of 35 fishery experts from all over the world. The paper provides new insights and shared experiences about social sustainability in the fish value chain to overcome the crisis times we are living in.

#UsapTayo: Utilizing Tweetchat for Mental Health Advocacy in the Philippines

Abstract Mental health remains a public health concern across countries. It is estimated that 1 in 4 people will be affected by mental or neurological disorders at some point in their lives. In the Philippines, about 3 million Filipinos live with depression. Mortality rate for suicide is 3.2 per 100,000 population. Meanwhile, social media use remains high in the country with 76 million users in 2019. It is thus important to explore potential ways in maximizing social media for mental health advocacy. From January 1 to December 31, 2019, a mental health tweetchat “#UsapTayo” (direct Filipino translation of WHO's #LetsTalk) was observed every 10th, 20th, 30th of the month from 7:00 to 8:00 PM. #UsapTayo aimed to answer how effective social media platforms like Twitter in promoting mental health awareness and education among Filipino Twitter users. Engagements and impressions from users were measured using Symplur, a healthcare hashtag analytics platform. From January to December 2019, a total of 4,626 users participated in the tweetchat. Impressions for the year reached 52 million with an average of 4.75 million impressions per month. Engagements and impressions were recorded highest in the month of September with 1,169 users and 8.74 million, respectively. Overall, the tweetchat #UsapTayo was able to generate 14,385 tweets for the complete calendar year with suicide prevention identified as the most discussed topic among Filipino Twitter users. Given the country's high social media penetration rate at 71% with Twitter ranking as the second most frequently used social media, leveraging this platform improves access to information and helps in normalizing conversations on mental health. #UsapTayo then partnered with #ThereIsHelp, a project initiated by Twitter to create safer spaces online through integration of suicide prevention measures. It was also recommended convening a multistakeholder consultation to develop a national mental health promotion and communication plan. Key messages Innovative platforms in social media like tweetchat can be leveraged to promote safer digital space for mental health and to strengthen online effort for suicide prevention especially among youth. It is important to maximize the use of social media platforms for mental health advocacy particularly suicide prevention given the Philippines’ high penetration rate and access to social media.

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC)

BackgroundPeople living with HIV are living longer, and can experience physical, mental and social health challenges associated with aging and multimorbidity. Rehabilitation is well positioned to address disability and maximize healthy aging. An international collaborative network, called the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), works to guide this emerging field. In this article, we report findings from CIHRRC’s aim to identify emerging research priorities in HIV, aging and rehabilitation from the perspectives of people living with HIV, clinicians, researchers, representatives from community organizations and policy stakeholders.MethodsWe conducted a multi-stakeholder multi-method international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations to identify research priorities in HIV, aging and rehabilitation. Stakeholders identified research priorities during a one-day International Forum comprised of presentations and facilitated discussion. We collated and analyzed data using content analytical techniques, resulting in a framework of research priorities.ResultsSixty-nine stakeholders from countries including Canada (n = 62; 90%), the United Kingdom (n = 5; 7%), United States (n = 1; 1%) and Australia (n = 1; 1%) attended the International Forum on HIV, Aging and Rehabilitation Research. Stakeholders represented community-based organizations (n = 20; 29%), academic institutions (n = 18; 26%), community or institutional healthcare organizations (n = 11; 16%), research or knowledge production organizations (n = 10; 14%), and organizations representing government or industry (n = 10; 14%). The Framework of Research Priorities in HIV, Aging and Rehabilitation includes seven research priorities: (1) nature, extent and impact of disability, concurrent health conditions and chronic inflammation with HIV; (2) prevalence, severity and impact of frailty; (3) community and social participation aging with HIV; (4) strategies for chronic disease management and healthy aging with HIV; (5) facilitators and barriers to access and engagement in, rehabilitation; (6) effectiveness of rehabilitation interventions for healthy aging with HIV; and (7) advancing development and use of patient reported outcome measures in HIV and aging. The Framework highlights methodological considerations to approach the priorities and the importance of knowledge translation and exchange to apply research knowledge into practice, programs and policy.ConclusionsThese priorities offer a foundation for collaboration among international and multidisciplinary teams to advance the field of HIV, aging and rehabilitation in order to promote healthy aging with HIV.

Advancing the Sustainable Development Goals: An Analysis of the Potential Role of Philanthropy in Ghana

In September 2015, the Sustainable Development Goals (SDGs) were endorsed by the United Nations General Assembly as the cardinal agenda for guiding future global development. In financing the SDGs, there has been an increasing call on stakeholder diversification by leveraging on other non-state actors and private finance including philanthropic institutions in influencing, delivering and advancing the SDGs. Drawing on insights from the Ghanaian philanthropic sector, I show that philanthropic institutions play complementary roles in service delivery, support civil society organisations to engage in active action and advocacy, and enhance paradigm shifts in development thinking around the SDGs. I argue for the need in embracing complexity thinking that recognises that the attainment of the SDGs is dependent on the creation of an enabling environment and effective multi-stakeholder consultation.

Patient Registries: An Underused Resource for Medicines Evaluation : Operational proposals for increasing the use of patient registries in regulatory assessments.

IntroductionPatient registries, ‘organised systems that use observational methods to collect uniform data on a population defined by a particular disease, condition, or exposure, and that is followed over time’, are potentially valuable sources of data for supporting regulatory decision-making, especially for products to treat rare diseases. Nevertheless, patient registries are greatly underused in regulatory assessments. Reasons include heterogeneity in registry design and in the data collected, even across registries for the same disease, as well as unreliable data quality and data sharing impediments. The Patient Registries Initiative was established by the European Medicines Agency in 2015 to support registries in collecting data suitable to contribute to regulatory assessments, especially post-authorisation safety and effectiveness studies.MethodsWe conducted a qualitative synthesis of the published observations and recommendations from an initiative-led multi-stakeholder consultation and four disease-specific patient registry workshops. We identified the primary factors facilitating the use of registry data in regulatory assessments. We generated proposals on operational measures needed from stakeholders including registry holders, patients, healthcare professionals, regulators, marketing authorisation applicants and holders, and health technology assessment bodies for implementing these.ResultsTen factors were identified as facilitating registry use for supporting regulatory assessments of medicinal products. Proposals on operational measures needed for implementation were categorised according to three themes: (1) nature of the data collected and registry quality assurance processes; (2) registry governance, informed consent, data protection and sharing; and (3) stakeholder communication and planning of benefit-risk assessments.ConclusionsThese are the first explicit proposals, from a regulatory perspective, on operational methods for increasing the use of patient registries in medicines regulation. They apply to registry holders, patients, regulators, marketing authorisation holders/applicants and healthcare stakeholders broadly, and their implementation would greatly facilitate the use of these valuable data sources in regulatory decision-making.Electronic supplementary materialThe online version of this article (10.1007/s40264-019-00848-9) contains supplementary material, which is available to authorized users.

Learning from the development of two Integrated Care Pathways for dementia

Introduction: There is an increasing emphasis on the use of Integrated Care Pathways for dementia in the hospital environment. Despite this, the Irish National Audit of Dementia Care in Acute Hospitals De Siun et al. 2014 found that 94% of acute hospitals did not have a dementia care pathway in operation. The Health Service Executive HSE and Genio provided funding to three hospitals in Ireland to develop an ICP for dementia care. An independent evaluation was conducted to uncover the strengths and challenges of the ICPs developed, as well as to collate learning from the sites to further develop ICPs for those living with dementia. Methods: Mixed methods were used to evaluate two of the ICPs developed to date. This included analysis of service provider and service user data, as well as audit and Hospital Inpatient Enquiry HIPE data. Ethical approval was secured from the Faculty of Health Sciences Research Ethics Committees in Trinity College Dublin and relevant hospital Ethics Committees. Results: The complexity involved in developing and rolling out an ICP for dementia was highlighted. Findings demonstrated a number of facilitators and challenges in the development of ICPs. Facilitators included: project leadership; organisational support; dedicated project personnel; project responsiveness; and dovetailing with other clinical, educational or organisational developments. Challenges identified included: competing initiatives and acuity of care demands; absence of standardisation; deficits in communication; and pressure on resources. Discussion and conclusions: The person with dementia and their individualised needs should be central to any innovations in integrated dementia care. A dementia-friendly orientation needs to be embedded in the strategic objectives and operational planning of an organisation in order for meaningful impact to be achieved. Innovation in the development of ICPs needs well-defined governance and visionary leadership. Dedicated resources are required by such leaders to support dementia care development. Findings demonstrated that a consortium approach is beneficial for projects to design, test and implement innovations to develop integrated dementia care. ICP development and dementia-friendly environmental design are protracted and require extensive planning to include process mapping of the care journey, evidence review and multi stakeholder consultation. Therefore, such projects should make consideration of sufficient lead-in time to devise related interventions. Such planning activities should be viewed as sub-components of the overall intervention. In cases where dementia-specific roles are shown to have positively influence project impact, commitment and resources are required to maintain these roles in order to maximise and further develop gains.

CYBER-PR DALAM E-MUSRENBANG DI PEMERINTAH KOTA TANGERANG SELATAN

Since the launch of decentralization, the Musrenbang (Musyawarah Rencana Pembangunan) or Multi Stakeholder Consultation Forum for Development Planning is the principal instrument introduced by the Government of Indonesia for public consultation. In support of this participatory Musrenbang process, a number of regional governments including South Tangerang, have tried to increase participation by developing an online Public relations system. It is addressed to legislate transparency in budgeting and deepen the consultative approach down to the community level. The said system is electronic Musrenbang (e-Musrenbang) coordinated by Bappeda (City Development Planning Agency) together with disctrict level (Kecamatan). This research aimed to seek how the utilization of Cyber PR in Musrenbang by City Development Planning Agency of South Tangerang (Bappeda). Using qualitative data and case study method, the research conducted through in-depth interviews and FGD with bureaucrats in Bappeda, sub-district, village, and neighbourhood. E-Musrenbang as one of the concepts of Cyber PR conducted in Bappeda Tangerang Selatan, needs to be improved. This is to foster the use the application and the involvement of stakeholders for better Tangerang Selatan in the future.

Translating international HIV treatment guidelines into local priorities in Indonesia.

International guidelines recommend countries to expand antiretroviral therapy (ART) to all HIV-infected individuals and establish local-level priorities in relation to other treatment, prevention and mitigation interventions through fair processes. However, no practical guidance is provided for such priority-setting processes. Evidence-informed deliberative processes (EDPs) fill this gap and combine stakeholder deliberation to incorporate relevant social values with rational decision-making informed by evidence on these values. This study reports on the first-time implementation and evaluation of an EDP in HIV control, organised to support the AIDS Commission in West Java province, Indonesia, in the development of its strategic plan for 2014-2018. Under the responsibility of the provincial AIDS Commission, an EDP was implemented to select priority interventions using six steps: (i) situational analysis; (ii) formation of a multistakeholder Consultation Panel; (iii) selection of criteria; (iv) identification and assessment of interventions' performance; (v) deliberation; and (vi) selection of funding and implementing institutions. An independent researcher conducted in-depth interviews (n=21) with panel members to evaluate the process. The Consultation Panelincluded 23 stakeholders. They identified 50 interventions and these were evaluated against four criteria: impact on the epidemic, stigma reduction, cost-effectiveness and universal coverage. After a deliberative discussion, the Consultation Panelprioritised a combination of several treatment, prevention and mitigation interventions. The EDP improved both stakeholder involvement and the evidence base for the strategic planning process. EDPs fill an important gap which international guidelines and current tools for strategic planning in HIV control leave unaddressed.