Maternal and newborn health priority setting partnership in rural Uganda in association with the James Lind Alliance: a study protocol.

BackgroundMaternal and newborn deaths and ill health are relatively common in low income countries, but can adequately be addressed through locally, collaboratively designed, and responsive research. This has the potential to enable the affected women, their families and health workers themselves to explore 'why maternal and newborn adverse outcomes continue to occur. The objectives of the study include; To work with seldom heard groups of mothers, their families, and health workers to identify unanswered research questions for maternal and newborn health in villages and health facilities in rural UgandaTo establish locally responsive research questions for maternal and newborn health that could be prioritised together with the public in UgandaTo support the case for locally responsive research in maternal and newborn health by the ministry of health, academic researchers and funding bodies in Uganda.MethodsThe present study will follow the James Lind Alliance (JLA) Priority Setting Partnership (PSP) methodology. The project was initiated by an academic research group and will be managed by a research team at the Sanyu Africa Research Institute on a day to day basis. A steering group with a separate lay mothers' group and partners' group (individuals or organisations with interest in maternal and newborn health) will be recruited. The PSP will be initiated by launch meetings, then a face-to-face initial survey for the collection of raw unanswered questions; followed by data collation. A face-to-face interim prioritisation survey will then be performed to choose questions before the three separate final prioritisation workshops.The PSP will involve many participants from an illiterate, non-internet population in rural eastern Uganda, but all with an interest in strategies to avert maternal and newborn deaths or morbidities in rural eastern Uganda. This includes local rural women, their families, health and social workers, and relevant local groups or organisations.We will generate a top 10 list of maternal and newborn health research priorities from a group with no prior experience in setting a research agenda in rural eastern Uganda.DiscussionThe current protocol elaborates the JLA methods for application with a new topic and in a new setting translating the JLA principles not just into the local language, but into a rural, vulnerable, illiterate, and non-internet population in Uganda. The face-to-face human interaction is powerful in eliciting what exactly matters to individuals in this particular context as opposed to online surveys.This will be the first time that mothers and lay public with current or previous experience of maternal or neonatal adverse outcomes will have the opportunity to identify and prioritise research questions that matter to them in Uganda. We will be able to compare how the public would prioritise maternal health research questions over newborn health in this setting

The provision and impact of online patient access to their electronic health records (EHR) and transactional services on the quality and safety of health care: systematic review protocol

Background: Innovators have piloted improvements in communication, changed patterns of practice and patient empowerment from online access to electronic health records (EHR). International studies of online services, such as prescription ordering, online appointment booking and secure communications with primary care, show good uptake of email consultations, accessing test results and booking appointments; when technologies and business process are in place. Online access and transactional services are due to be rolled out across England by 2015; this review seeks to explore the impact of online access to health records and other online services on the quality and safety of primary health care. Objective: To assess the factors that may affect the provision of online patient access to their EHR and transactional services, and the impact of such access on the quality and safety of health care. Method: Two reviewers independently searched 11 international databases during the period 1999–2012. A range of papers including descriptive studies using qualitative or quantitative methods, hypothesis-testing studies and systematic reviews were included. A detailed eligibility criterion will be used to shape study inclusion .A team of experts will review these papers for eligibility, extract data using a customised extraction form and use the Grading of Recommendations Assessment, Development and Evaluation (GRADE) instrument to determine the quality of the evidence and the strengths of any recommendation. Data will then be descriptively summarised and thematically synthesised. Where feasible, we will perform a quantitative meta-analysis

Identifying research priorities for digital technology in mental healthcare: results of the James Lind Alliance Priority Setting Partnership

Digital technology, including the use of internet, smartphones and wearables, holds the promise to bridge the mental health treatment gap by offering a more accessible, potentially less stigmatising, flexible and tailored approach to mental healthcare. However, the evidence-base for digital mental health interventions and demonstration of clinical- and cost-effectiveness in real-world settings remains inadequate. The James Lind Alliance (JLA) Priority Setting Partnership (PSP) for digital technology in mental healthcare was established to identify research priorities that reflected the perspectives and unmet needs of people with lived experience of mental health problems, mental health service users, their carers, and healthcare practitioners. 644 participants contributed over 1350 separate questions, which were reduced by qualitative thematic analysis into six overarching themes. Following removal of out of scope questions and a comprehensive search of existing evidence, 134 questions were verified as uncertainties suitable for research. These questions were then ranked online and in workshops by 628 participants to produce a shortlist of 26. The top ten research priorities were identified by consensus at a stakeholder workshop. The top ten priorities should inform research policy and funding in this field. Identified priorities primarily relate to the safety and efficacy of digital technology interventions in comparison with face to face interventions, evidence of population reach, mechanisms of therapeutic change, and how best to optimize the effectiveness of digital interventions in combination with human support

Priorities for future research on reducing and stopping psychiatric medicines using a James Lind Alliance priority setting partnership: The PROTECT study protocol [version 1; peer review: 2 approved]

Background: There is a growing number of service users looking to discontinue use of psychiatric medicines. Tapering is the recommended approach for reducing and/or discontinuing the use of psychiatric medicines. This involves gradually reducing the dose over time to minimise the potential for withdrawal symptoms. However, many uncertainties exist regarding the process of reducing and stopping psychiatric medicines. This study will use a James Lind Alliance Priority Setting Partnership to determine the Top 10 unanswered questions and uncertainties about reducing and stopping psychiatric medicines. Methods: The Priority Setting Partnership will be conducted using the James Lind Alliance methodology. It will involve seven stages: (i) creating an international Steering Group of representatives from key stakeholder groups that will include people with lived experience of taking and/or stopping psychiatric medicines, family members, carers/supporters and healthcare professionals, and identifying potential partners to support key activities (e.g. dissemination); (ii) gathering uncertainties about reducing and stopping psychiatric medicines from key stakeholders using an online survey; (iii) data processing and summarising the survey responses; (iv) checking the summary questions against existing evidence and verifying uncertainties; (v) shortlisting the questions using a second online survey; (vi) determining the Top 10 research questions through an online prioritisation workshop; (vii) disseminating results. Conclusions: This study will use a Priority Setting Partnership to generate a Top 10 list of research questions and uncertainties about reducing and stopping psychiatric medicines. This list will help to guide future research and deliver responsive and strategic allocation of research resources, with a view to ultimately improving the future health and well-being of individuals who are taking psychiatric medicines

Research priorities for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the results of a James Lind alliance priority setting exercise

Objective: To identify research priorities of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and those who support and care for them. Method: Using the James Lind Alliance’s protocols, online surveys and workshops were held. The first survey asked participants from the U.K. to submit research questions about ME/CFS which were important to them. In the second, participants prioritised frequently submitted questions from the 1st survey. These were short listed and then workshop discussions were held to reach consensus on the top ten research priorities. Results: 1565 participated in the 1st survey and 5300 research priorities were submitted. 1752 participated in the 2nd. In both surveys, the predominant demographic was white, middle-aged women with ME/CFS. 15–17% were family/carers of people with ME/CFS and 4–6% were health and social care workers. From the 1st survey, 59 summary questions were identified. These were prioritised and short listed to 18 questions. Of these, the top 10 covered 1. Post-exertional malaise, 2. Use of existing drugs for other conditions, 3. Diagnosis, 4. Autoimmunity, 5. Sub-types, 6. Post-infective cause, 7. Neurological symptomology, 8. Genetics, 9. Severe ME/CFS, 10. Mitochronical dysfunction and 10 (equal) Oxygenation dysfunction. Conclusion: People with ME/CFS, their families and carers, and health care professionals worked together to identify, for the first time, the research priorities for ME/CFS. These focus on the biomedical causes of ME/CFS and how to diagnose, treat and manage it. Researchers and funding bodies should consider these in their plans for future research

Evidence for access: systematic scoping review of access systems in general practice

Background: access to GP appointments is increasingly challenging in many high-income countries, with an overstretched workforce and rising demand. Various access systems have been developed and evaluated internationally.Aim: we aimed to systematically consolidate the current international evidence base related to different types of GP access systems.Design and setting: a scoping review examining international literature.Method: literature searches were run across relevant databases in May 2022. Title, abstract and full text screenings were carried out. Data from included studies were extracted and mapped to synthesise the components and aims within different GP access systems.Results: 49 studies were included in the review. The majority of these were set in the UK. Some access systems featured heavily in the literature, such as Advanced Access, telephone triage and online consultations, and others less so. There were two key strategies adopted by systems which related to either changing appointment capacity or modifying patient pathways. Components related to these strategies are summarised and illustrated as a schematic representation. Most rationales behind access systems were practice, rather than patient, focused. 'Add on' systems and aims for efficiency became more popular in recent years.Conclusion: the synthesis provides a useful tool in understanding access systems' aims, design, and implementation. With focus on alleviating demand, patient-focused outcomes appear to be under investigated and potentially overlooked during design and implementation. More recently, digital services are promoted as offering patient choice and convenience. But a context where demand outweighs resources challenges the premise that extending choice is possible.</p

Identifying research priorities for digital technology in mental healthcare: results of the James Lind Alliance Priority Setting Partnership

Digital technology, including the use of internet, smartphones and wearables, holds the promise to bridge the mental health treatment gap by offering a more accessible, potentially less stigmatising, flexible and tailored approach to mental healthcare. However, the evidence-base for digital mental health interventions and demonstration of clinical- and cost-effectiveness in real-world settings remains inadequate. The James Lind Alliance (JLA) Priority Setting Partnership (PSP) for digital technology in mental healthcare was established to identify research priorities that reflected the perspectives and unmet needs of people with lived experience of mental health problems, mental health service users, their carers, and healthcare practitioners. 644 participants contributed over 1350 separate questions, which were reduced by qualitative thematic analysis into six overarching themes. Following removal of out of scope questions and a comprehensive search of existing evidence, 134 questions were verified as uncertainties suitable for research. These questions were then ranked online and in workshops by 628 participants to produce a shortlist of 26. The top ten research priorities were identified by consensus at a stakeholder workshop. The top ten priorities should inform research policy and funding in this field. Identified priorities primarily relate to the safety and efficacy of digital technology interventions in comparison with face to face interventions, evidence of population reach, mechanisms of therapeutic change, and how best to optimize the effectiveness of digital interventions in combination with human support