Understanding who is and isn't involved and engaged in health research: capturing and analysing demographic data to diversify patient and public involvement and engagement.

Background: Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved in research tend to be aged 61 years or above, White and female. Calls for greater diversity and inclusion in PPIE have become more urgent especially since the COVID-19 pandemic, so that research can better address health inequalities and be relevant for all sectors of society.

"We are not hard to reach, but we may find it hard to trust" …. Involving and engaging 'seldom listened to' community voices in clinical translational health research: a social innovation approach.

Background: Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and thus address issues of health equity. Several recent reports, however, indicate that public involvement is exclusive, including in its interactions with ethnic groups.

Impact of involving people with dementia and their care partners in research: a qualitative study.

Objectives: We aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.

Design: We used monitoring forms to record the impact of the research programme's PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.

Setting: We evaluated Research User Groups (RUGs-older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.

Evaluation of a research awareness training programme to support research involvement of older people with dementia and their care partners.

Background: Best-practice guidelines recommend that appropriate support be provided to public contributors to facilitate their involvement in research. One form of support is research awareness training. Older people with dementia and care partners were involved in four Research User Groups (RUGs) in the UK, France, Cyprus and Greece.

Innovating public engagement and patient involvement through strategic collaboration and practice.

Background: Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all.

Methods: This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England.

Patient and public involvement in dementia research in the European Union: a scoping review.

Background: Internationally, there is a drive to involve patients and the public in health research, due to recognition that patient and public involvement (PPI) may increase the impact and relevance of health research. This scoping review describes the extent and nature of PPI in dementia research in the European Union (EU) and summarises: (i) how PPI is carried out; and (ii) the impact of PPI on people living with dementia and the public, researchers, and the research process.

Methods: Relevant studies were identified by searches in electronic reference databases and then filtered by two reviewers independently.

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.

Plain English Summary: Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best to involve older people with dementia and to be able to show the benefits of involving older people with dementia in dementia research.This paper describes a research plan to explore the involvement of older people with dementia and age-related hearing and/or vision impairment in a European research project investigating the combined impact of dementia with hearing and/or vision impairment.

What do young people with rheumatic conditions in the UK think about research involvement? A qualitative study.

Background: Involving people of all ages in health research is now widely advocated. To date, no studies have explored whether and how young people with chronic rheumatic conditions want to be involved in influencing health research. This study aimed to explore amongst young people with rheumatic conditions, 1) their experiences of research participation and involvement 2) their beliefs about research involvement and 3) beliefs about how young people's involvement should be organized in the future.

Working with public contributors to improve the patient experience at the Manchester Clinical Research Facility: an evaluation of the Experience Based Design approach.

Plain English Summary: The Experience Based Design (EBD) approach involves patients, staff and members of the public working together to improve a service. This paper evaluates the methods that are used to involve patients and members of the public in a project that aimed to improve the patient experience at Manchester Clinical Research Facility (MCRF). The aim was to explore what helps staff and members of the public to work well together.

Research protocol for a complex intervention to support hearing and vision function to improve the lives of people with dementia.

Background: Hearing and vision impairments are among the most common and disabling comorbidities in people living with dementia. Intervening to improve sensory function could be a means by which the lives of people living with dementia may be improved. However, very few studies have tried to ameliorate outcomes in dementia by improving sensory function.

What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study.

Background: The involvement of people of all ages including young people in research is now widely advocated but prioritisation of research topics is still driven largely by professional agendas. Evidence from adult literature has reported a mismatch between a researcher and patient generated list of research topics. There have been no studies to date exploring the priorities of young people with long term conditions other than in SLE.

Study protocol: Determining what young people with rheumatic disease consider important to research (the Young People's Opinions Underpinning Rheumatology Research - YOURR project).

Plain English Summary: Involving young people in research about their health is increasingly recognized as being important to make sure that research is focused more on the needs of young people. However, at present, ideas about what should be researched and found out mainly come from researchers and health professionals like doctors and nurses rather than young people. Therefore, in the past, young people's ideas about what should be researched in terms of rheumatic problems have not been explored.

What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study.

Objectives: To explore European-based pharmaceutical industry professionals' beliefs about patient and public involvement (PPI) in medicines research and development (R&D).

Setting: Pharmaceutical companies in the UK, Poland and Spain.

Participants: 21 pharmaceutical industry professionals, four based in the UK, five with pan-European roles, four based in Spain and eight based in Poland.

What the public knows and wants to know about medicines research and development: a survey of the general public in six European countries.

Objectives: To explore public knowledge of, and interest in, learning more about medicines R&D in six European countries.

Design: Online survey of 6931 members of the public across Europe.

Methods: The survey formed part of a public omnibus survey.

Prevalence and impact of chronic widespread pain in the Bangladeshi and White populations of Tower Hamlets, East London.

The prevalence and impact of chronic pain differ between ethnic groups. We report a study of the comparative prevalence and impact of chronic pain in Bangladeshi, British Bangladeshi and White British/Irish people. We posted a short questionnaire to a random sample of 4,480 patients registered with 16 general practices in the London Borough of Tower Hamlets and conducted a longer questionnaire with patients in the waiting areas at those practices.

Methodological challenges and approaches to improving response rates in population surveys in areas of extreme deprivation.

Background: Achieving good response rates to population surveys from hard to reach groups in deprived areas can be challenging.

Aim: To explore and compare different approaches to improving response rates in an economically deprived multicultural area.

Method: Following a lower than anticipated response rate in a pilot study for a postal questionnaire survey of chronic pain (79/653 (12%)), we conducted a second pilot involving a shorter postal survey and separate collection of more detailed information in a waiting room survey.

The OPERA trial: a protocol for the process evaluation of a randomised trial of an exercise intervention for older people in residential and nursing accommodation.

Background: The OPERA trial is large cluster randomised trial testing a physical activity intervention to address depression amongst people living in nursing and residential homes for older people. A process evaluation was commissioned alongside the trial and we report the protocol for this process evaluation. Challenges included the cognitive and physical ability of the participants, the need to respect the privacy of all home residents, including study non-participants, and the physical structure of the homes.

British pain clinic practitioners' recognition and use of the bio-psychosocial pain management model for patients when physical interventions are ineffective or inappropriate: results of a qualitative study.

Background: To explore how chronic musculoskeletal pain is managed in multidisciplinary pain clinics for patients for whom physical interventions are inappropriate or ineffective.

Methods: A qualitative study was undertaken using semi-structured interviews with twenty five members of the pain management team drawn from seven pain clinics and one pain management unit located across the UK.

Results: All clinics reported using a multidisciplinary bio-psychosocial model.

Advice to use topical or oral ibuprofen for chronic knee pain in older people: randomised controlled trial and patient preference study.

Objective: To determine whether older patients with chronic knee pain should be advised to use topical or oral non-steroidal anti-inflammatory drugs (NSAIDs).

Design: Randomised controlled trial and patient preference study.

Setting: 26 general practices.

Influences on older people's decision making regarding choice of topical or oral NSAIDs for knee pain: qualitative study.

Objective: To explore the factors that influence older people's decision making regarding use of topical or oral ibuprofen for their knee pain.

Design: Qualitative interview study nested within a randomised controlled trial and a patient preference study that compared advice to use oral or topical non-steroidal anti-inflammatory drugs (NSAIDs) for knee pain in older people.

Setting: 11 general practices.

The influence of patients' and primary care practitioners' beliefs and expectations about chronic musculoskeletal pain on the process of care: a systematic review of qualitative studies.

Objectives: To review qualitative, empirical studies exploring the influence of patients' and primary care practitioners' beliefs and expectations on the process of care for chronic musculoskeletal pain.

Methods: A multidisciplinary review group searched 9 bibliographic databases. The group worked in pairs to screen titles and abstracts for relevance, to quality appraise relevant studies, to extract data from high-quality studies and to undertake a thematic analysis of this data.

Asking older people about fear of falling did not have a negative effect.

Background And Objective: To assess whether completing a questionnaire on risk of falling could affect outcome measures: fear of falling, reported falls, and health service contacts in older people (panel conditioning).

Methods: We used a postal questionnaire to assess the effect on falls risk of implementing falls injury prevention guidelines within a single locality in outer London, UK. We compared responses for the baseline and 6-month follow-up surveys with those for a fresh survey.

Measuring troublesomeness of chronic pain by location.

Background: Current measures of pain assess the relative contribution of pain in different body regions to the overall impact of pain. We developed a series of questions to measure the relative 'troublesomeness' of pain in different body regions (the "troublesomeness grid"). The study aimed to determine whether the "troublesomeness grid" is an appropriate measure to assess the severity of pain in different body regions, allowing the comparative severity of pain in different body regions to be assessed.

TOIB Study. Are topical or oral ibuprofen equally effective for the treatment of chronic knee pain presenting in primary care: a randomised controlled trial with patient preference study. [ISRCTN79353052].

Background: Many older people have chronic knee pain. Both topical and oral non- steroidal anti-inflammatory drugs (NSAIDs) are commonly used to treat this. Oral NSAIDS are effective, at least in the short term, but can have severe adverse effects.