Limited access to multiple sclerosis (MS)-focused care in rural areas can decrease the quality of life in individuals living with MS while influencing both physical and mental health.

The objectives of this research were to compare demographic and clinical outcomes in participants with MS who reside within urban, semi-urban and rural settings within Newfoundland and Labrador. All participants were assessed by an MS neurologist, and data collection included participants’ clinical history, date of diagnosis, disease-modifying therapy (DMT) use, measures of disability, fatigue, pain, heat sensitivity, depression, anxiety and disease activity.

Overall, no demographic differences were observed between rural and urban areas. Furthermore, the categorization of primary residence did not demonstrate any differences in physical disability or indicators of disease activity. A significantly higher percentage of participants were prescribed platform or high-efficacy DMTs in semi-urban areas; a higher percentage of participants in urban and rural areas were prescribed moderate-efficacy DMTs. Compared to depression, anxiety was more prevalent within the entire cohort. Comparable levels of anxiety were measured across all areas, yet individuals in rural settings experienced greater levels of depression. Individuals living with MS in either an urban or rural setting demonstrated clinical similarities, which were relatively equally managed by DMTs.

Despite greater levels of depression in rural areas, the results of this study highlight that an overall comparable level and continuity of care is provided to individuals living with MS within rural and urban Newfoundland and Labrador.

This study comprehensively reviewed reports on patient and public involvement and engagement (PPIE) in health technology assessment (HTA) overseas and identified the status and possible future measures, of PPIE in Japanese HTA.

The series of reviews targeted systematic reviews (SR#1), references in SR#1 (SR#2), and new articles after SR#1 (SR#3). The MEDLINE and Embase databases were searched through August 2024 using the terms “patient involvement/engagement,” “patient participation,” “community participation,” “public involvement/engagement,” and “health technology assessment.” The implementation details were extracted from information published on the websites of the HTA agencies.

Three review articles in SR#1, 12 references in SR#2, and 10 articles in SR#3 were selected. The opportunities for countries, including Japan, to participate in discussions on the HTA process did not differ significantly; however, information on PPIE in Japan was scarce and did not indicate their purpose and value.

Collected articles indicated that the value of PPIE in HTA includes relevance, equity, fairness, legitimacy, and capacity building. The participation of patient and public representatives in Japanese discussions since 2005 appeared to be very limited to consider PPIE in HTA. In countries that implement PPIE in HTA, the value of PPIE is explicit: the process guidelines are specific and provide an appropriate environment for input that includes education, training, and feedback. Future reforms of the Japanese system will require discussions on PPIE purpose and value, implementation, and creating an environment in which a diverse range of patients and the public can easily express their views.

Nearly 25% of people with intellectual disability (PwID) have epilepsy compared to 1% of the UK general population. PwID are commonly excluded from research, eventually affecting their care. Understanding seizures in PwID is particularly challenging because of reliance on subjective external observation and poor objective validation. Remote electroencephalography (EEG) monitoring could capture objective data, but particular challenges and implementation strategies for this population need to be understood.

This co-production aimed to explore the accessibility and potential impact of a remote, long-term EEG tool (UnEEG 24/7 SubQ) for PwID and epilepsy.

We conducted six, 2-hour long workshops; three with people with mild intellectual disability and three with families/carers of people with moderate–profound intellectual disability. Brief presentations, easy read information and model demonstrations were used to explain the problem and device. A semi-structured guide developed by a communication specialist and art-based techniques facilitated discussion with PwID. For family/carers, active listening was employed. All conversations were recorded and transcribed. Artificial intelligence-based coding and thematic analysis (ATLAS.ti and ChatGPT) were synthesised with manual theming to generate insights.

Co-production included four PwID, five family members and seven care professionals. Three main themes were identified: (1) perceived benefits for improving seizure understanding, informing care and reducing family and carer responsibility to accurately identify seizures; (2) the device was feasible for some PwID but not all; and (3) appropriate person-centred communication is essential for all stakeholders to reduce concerns.

The workshops identified key benefits and implementing barriers to SubQ in PwID.

There are increasing calls for neurodivergent peoples’ involvement in research into neurodevelopmental conditions. So far, however, this has tended to be achieved only through membership of external patient and public involvement (PPI) panels. The Regulating Emotions – Strengthening Adolescent Resilience (RE-STAR) programme is building a new participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the heart of the research team so that they can contribute to shaping and delivering its research plan.

To outline the principles on which the RE-STAR participatory model is based and describe its practical implementation and benefits, especially concerning the central role of members of the Youth Researcher Panel (Y-RPers).

The model presented is a culmination of a 24-month process during which Y-RPers moved from advisors to co-researchers integrated within RE-STAR. It is shaped by the principles of co-intentionality. The account here was agreed following multiple iterative cycles of collaborative discussion between academic researchers, Y-RPers and other stakeholders.

Based on our collective reflections we offer general guidance on how to effectively integrate young people with diagnoses of ADHD and/or autism into the core of the translational research process. We also describe the specific theoretical, methodological and analytical benefits of Y-RPer involvement in RE-STAR.

Although in its infancy, RE-STAR has demonstrated the model's potential to enrich translational science in a way that can change our understanding of the relationship between autism, ADHD and mental health. When appropriately adapted we believe the model can be applied to other types of neurodivergence and/or mental health conditions.

1. (1) To understand the issues surrounding the delivery of brief CBT to young people with OCD.

2. (2) To understand ways of reviewing, developing and improving the CBT materials with a range of young people, their parents, and clinicians.

3. (3) To understand how to consult with clinicians in relation to the implementation of the treatment.

4. (4) To consider how the process of this type of work can assist in the next steps of implementing a manualised intervention in routine CAMHS.

To examine the impact of a Patient and Public Involvement exercise on the development of British Congenital Cardiac Association Fetal Cardiology Standards 2021.

Open-ended, semi-structured interviews were undertaken to inform the design of a study to improve the quality of parents’ experiences during antenatal and perinatal care of their child with CHD. This Patient and Public Involvement exercise was used to inform the final version of the drafted ‘Standards’.

One-on-one interviews with parents who responded to a request on the closed Facebook page of the user group “Little Hearts Matter”: “Would you be interested in helping us to design a study about parents’ experience on learning that their child had CHD”?

Parents of children with single ventricle CHD.

Twenty-one parents (18 mothers, 3 fathers) participated. Parents responses were reported to have variably reinforced, augmented, and added specificity in the later stages of drafting to six of the seven subsections of Section C Information and Support for Parents including: “At the time of the Scan”; “Counselling following the identification of an abnormality”; “Written information/resources”; “Parent support”; “Communication with other teams and ongoing care”; and “Bereavement support”.

This Patient and Public Involvement exercise successfully informed the development of Standards after the initial drafting. It contributed to the establishment of face validity of the ‘Standards’, especially when consistent with what is reported in the literature. Further research is needed to explore approaches to involving and standardising Patient and Public Involvement in the development of clinical standards.

The study, conducted by the French National Authority for Health (HAS), aimed to identify available online health technology assessment (HTA) training tools for patients, specifically those used by HTA bodies (HTAbs) and major selected European and international patient and consumer groups (PCGs), to inform an HTA training approach for HAS.

A literature search, a review of selected websites, semi-structured interviews with HTAbs and patient groups, and discussion within a dedicated working group to help target the needs and preferences of patients and consumers were conducted. Online HTA training tools relating to HTA and patient and public involvement (PPI), published or translated into English or French, were included in the study results.

Eighty-two online HTA training tools for patients and consumers were selected according to the specified inclusion criteria coming from sixteen international HTAbs, nine European and international PCGs, and thirteen other organizations. Two main categories emerged: the first relating to HTA and the second relating to PPI in HTA. The formats of these tools ranged from interactive and non-interactive formats with varying accessibility and assessment methods. No journal articles mentioned explicitly the content and format of PCG training tools.

This research served as a basis for HAS to develop their own HTA training tools and materials for patients and consumers. Two training tools were subsequently developed, guided by the needs and preferences of a patient and consumer working group, and were published on the HAS website in November 2022.

Patient and public involvement (PPI) groups can provide valuable input to create more accessible study documents with less jargon. However, we don't know whether this procedure improves accessibility for potential participants.

We assessed whether participant information sheets were rated as more accessible after PPI review and which aspects of information sheets and study design were important to mental health patients compared with a control group with no mental health service use.

This was a double-blind quasi-experimental study using a mixed-methods explanatory design. Patients and control participants quantitatively rated pre- and post-review documents. Semi-structured interviews were thematically analysed to gain qualitative feedback on opinions of information sheets and studies. Two-way multivariate analysis of variance was used to detect differences in ratings between pre- and post-review documents.

We found no significant (P < 0.05) improvements in patient (n = 15) or control group (n = 21) ratings after PPI review. Patients and controls both rated PPI as of low importance in studies and considered the study rationale as most important. However, PPI was often misunderstood, with participants believing that it meant lay patients would take over the design and administration of the study. Qualitative findings highlight the importance of clear, friendly and visually appealing information sheets.

Researchers should be aware of what participants want to know about so they can create information sheets addressing these priorities, for example, explaining why the research is necessary. PPI is poorly understood by the wider population and efforts must be made to increase diversity in participation.

Patient and public involvement (PPI) plays a crucial role in ensuring research is carried out in conjunction with the people that it will impact upon. In this article, we present our experiences and reflections from working collaboratively with patients and public through the lifetime of an National Institute for Health Research (NIHR) programme grant; the Chronic Headache Education and Self-management Study (CHESS) which took place between 2015 and 2020.

We worked closely with three leading UK migraine charities and a lay advisory group throughout the programme. We followed NIHR standards and used the Guidance for Reporting Involvement of Patients and the Public checklist. We consulted our PPI contacts using a variety of methods depending on the phase of the study and the nature of the request. This included emails, discussions, and face-to-face contact.

PPI members contributed throughout the study in the programme development, in the grant application, ethics documentation, and trial oversight. During the feasibility study; in supporting the development of a classification interview for chronic headache by participating in a headache classification conference, assessing the relevance, and acceptability of patient-reported outcome measures by helping to analyse cognitive interview data, and testing the smartphone application making suggestions on how best to present the summary of data collected for participants. Due to PPI contribution, the content and duration of the study intervention were adapted and a Delphi study with consensus meeting developed a core outcome set for migraine studies.

The involvement of the public and patients in CHESS has allowed us to shape its overall design, intervention development, and establish a core outcome set for future migraine studies. We have reflected on many learning points for the future application of PPI.

Patient and public involvement can improve study outcomes, but little data have been collected on why this might be. We investigated the impact of the Feasibility and Support to Timely Recruitment for Research (FAST-R) service, made up of trained patients and carers who review research documents at the beginning of the research pipeline.

To investigate the impact of the FAST-R service, and to provide researchers with guidelines to improve study documents.

A mixed-methods design assessing changes and suggestions in documents submitted to the FAST-R service from 2011 to 2020. Quantitative measures were readability, word count, jargon words before and after review, the effects over time and if changes were implemented. We also asked eight reviewers to blindly select a pre- or post-review participant information sheet as their preferred version. Reviewers’ comments were analysed qualitatively via thematic analysis.

After review, documents were longer and contained less jargon, but did not improve readability. Jargon and the number of suggested changes increased over time. Participant information sheets had the most suggested changes. Reviewers wanted clarity, better presentation and felt that documents lacked key information such as remuneration, risks involved and data management. Six out of eight reviewers preferred the post-review participant information sheet. FAST-R reviewers provided jargon words and phrases with alternatives for researchers to use.

Longer documents are acceptable if they are clear, with jargon explained or substituted. The highlighted barriers to true informed consent are not decreasing, although this study has suggestions for improving research document accessibility.

To summarize current evidence on patient and public involvement (PPI) in health technology assessment (HTA) in order to synthesize the barriers and facilitators, and to propose a framework to assess its impact.

We conducted an update of a systematic review published in 2011 considering the recent scientific literature (qualitative, quantitative, and mixed-methods studies). We searched papers published between March 2009 (end of the initial search) and December 2019 in five databases using specific search strategies. We identified other publications through citation tracking and contacting authors of previous related studies. Reviewers independently selected relevant studies based on prespecified inclusion and exclusion criteria. We extracted information using a pre-established grid.

We identified a total of 7872 publications from the main search strategy. Ultimately, thirty-one distinct new studies met the inclusion criteria, whereas seventeen studies were included in the previous systematic review. PPI is realized through two main strategies: (i) patients and public members participate directly in decision-making processes (participation) and (ii) patients or public perspectives are solicited to inform decisions (consultation or indirect participation). This review synthesizes the barriers and facilitators to PPI in HTA, and a framework to assess its impact is proposed.

The number of studies on patients or public involvement in HTA has dramatically increased in recent years. Findings from this updated systematic review show that PPI is done mostly through consultation and that direct involvement is less frequent. Several barriers to PPI in HTA exist, notably the lack of information to patients and public about HTA and the lack of guidance and policies to support PPI in HTA.

In low- and middle-income countries (LMICs) striving to achieve universal health coverage, the involvement of different stakeholders in formal or informal ways in health technology assessment (HTA) must be culturally and socially relevant and acceptable. Challenges may be different from those seen in high-income countries. In this article, we aimed to pilot a questionnaire for uncovering the context-related aspects of patient and citizen involvement (PCI) in LMICs, collecting experiences encountered with PCI, and identifying opportunities for patients and citizens toward contributing to local decision- and policy-making processes related to health technologies.

Through a collaborative, international multi-stakeholder initiative, a questionnaire was developed for describing each LMIC's healthcare system context and the emergence of opportunities for PCI relating to HTA. The questionnaire was piloted in the first set of countries (Brazil, Indonesia, Nigeria, and South Africa).

The questionnaire was successfully applied across four diverse LMICs, which are at different stages of using HTA to inform decision making. Only in Brazil, formal ways of PCI have been defined. In the other countries, there is informal influence that is contingent upon the engagement level of patient and citizen advocacy groups (PCAGs), usually strongest in areas such as HIV/AIDS, TB, oncology, or rare diseases.

The questionnaire can be used to analyze the options for patients and citizens to participate in HTA or healthcare decision making. It will be rolled out to more LMICs to describe the requirements and opportunities for PCI in the context of LMICs and to identify possible routes and methodologies for devising a more systematic and formalized PCI in LMICs.

The Scottish Health Technologies Group (SHTG) provides evidence support and advice to the National Health Service in Scotland on the use of new and existing health technologies, which, although not medicines, are likely to have significant implications for people's care. The purpose of this paper is to highlight the developments that have taken place in the SHTG's patient involvement processes in the years 2017 to 2019, focusing primarily on specific engagement with patient organizations and considering how the new approaches have been received by stakeholders.

Feedback from patient organizations that participated in the SHTG submission process, alongside SHTG committee members’ views on patient organizations contributions, was gathered primarily via online questionnaires. The number of times that patient organizations were invited and accepted the opportunity to peer-review SHTG advice statements prior to and after the employment of a Public Involvement Advisor (PIA) was analyzed.

Completed questionnaires (n = 4) from three case study examples showed high patient organization satisfaction with their experience of the SHTG process. The feedback from SHTG committee members that was gathered indicated that patient organization participation was generally well received. The number of peer reviews from patient organizations for SHTG advice statements in 2018–2019 doubled to 86 percent of the total advice statements (n = 22), compared with 43 percent (n = 14) in 2016–2017.

Significant progress has been made toward improving the SHTG's patient involvement processes. A dedicated PIA post within the SHTG has allowed for a more tailored support to patient organizations and has encouraged their increased participation in SHTG processes.

Patient and public involvement (PPI) is a priority for health research. PPI improves the relevance and quality of research. The study aimed to involve service users in identifying research priorities for the service. A two-phase adapted Delphi technique was used to generate a list of research topics from service users in secure in-patient mental health settings and on specialist mental health prison wings. Topic content analysis was undertaken. Service users were further consulted, and research themes were ranked in order of priority.

Of the eight research themes identified, the three given the highest priority by service users were, in descending order, physical health, future plans and moving on, and causes of illness and crime.

Service users are willing to be involved in setting research priorities for mental health services. Through non-tokenistic PPI, service users can uniquely shape the research agenda of mental health services.