Patient And Public Involvement Members Research Articles

A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research

BackgroundThere are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research.MethodsPPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a “you said, we did” impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion.ResultsIn total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a “jargon buster”, an animation and an online recipe book (http://www.re-equipp.co.uk/) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research.ConclusionCollaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.

A qualitative exploration of the psychosocial needs of people living with long-term conditions and their perspectives on online peer support.

Approximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design. Through a co-produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical-realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns. Ten people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support;and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs. Despite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms. This work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.

The patient voice: More than a tick box exercise?

Patient and public involvement (PPI) in healthcare professional education is important, yet publications often provide insufficient detail about the types of involvement patients undertake and the level of autonomy that they have. This study details the factors that promote or hinder PPI within a university healthcare professional education setting and the types of activities members conducted. PPI activities were described and mapped against a framework for PPI in healthcare professional education. Semi-structured interviews with PPI group members explored the motivators, enablers and barriers that influence involvement. The framework highlighted that the PPI group were involved in a range of activities, yet they received limited training for their role and were infrequently involved in planning the activities. When interviewed, PPI members did not consider that these factors were the important promoters or barriers to involvement, instead emphasising five themes: (1) their individual characteristics, (2) factors relating to the university organisation, (3) relationships between themselves, faculty and students, (4) time in their role and (5) evidence of their impact. Supporting PPI members whilst working, rather than provision of formal training was considered most empowering for group members. This was mediated through having enough time in their role to develop supportive relationships with faculty, which in turn promoted self-confidence and increased autonomy. This should be considered when making PPI appointments. Small changes in processes during education planning can make it easier for PPI members to bring their own agenda forward and promote equity during education decision making.

Gatekeepers in research: the experience of recruiting carers of people with chronic blood cancers.

Gatekeepers play a crucial role in successfully recruiting participants to nurse-led qualitative research, particularly in clinical settings. To present the authors' experience of recruiting and conducting qualitative interviews during the COVID-19 pandemic with the carers of patients who have chronic haematological malignancies, and the effects that gatekeepers had on recruitment. The authors had to adapt and adjust their research plan because of difficulties in accessing their target population. Establishing and maintaining relationships with gatekeepers and a Patient and Public Involvement (PPI) panel was integral in successfully collecting data. Ongoing reflexivity and feedback from supervisors, gatekeepers and PPI members in addition to developing research experience can help researchers to overcome challenges in recruiting difficult-to-access populations. Researchers need to be prepared for challenges to their research plans and carefully consider the options available for addressing these challenges. Reaching out to others is integral in expanding researchers' ideas.

A framework for implementing Patient and Public Involvement in mental health research: The PATHWAY research programme benchmarked against NIHR standards.

Patient and Public Involvement (PPI) in research has become a key component recommended by research commissioners, grant award bodies and specified in government policies. Despite the increased call for PPI,few studies have demonstrated how to implement PPI within large-scale research studies. The aim of the current study was to provide a case example of the implementation of a patient advisory group in a large-scale mental health research programme (PATHWAY) and to benchmark this against UK standards. A PPI group was incorporated throughout the PATHWAY research programme, from grant development to dissemination. The group attended regular meetings and supported participant recruitment, evaluated patient-facing documents, supported the piloting of the research interventionand co-developed the dissemination and impact strategy. The implementation of PPI throughout the project was benchmarked against the UK standards for PPI. The inclusion of PPI in the PATHWAY project provided tangible changes to the research project (i.e., improving study documents, co-developing dissemination materials) but also proved to be a beneficial experience to PPI members through the development of new skills and the opportunity to provide a patient voice in research. We show how PPI was involved across seven study phases and provide examples of implementation of the six UK standards. The study did not include PPI in data analysis but met all the UK standards for PPI. Challenges regarding practical components (i.e., meeting frequency, language use), increasing diversityand PPI members' knowledge of research were highlighted as areas for further improvement. We provide a case example of how PPI can be implemented throughout a research lifecycle and we note the barriers faced and make suggestions for PPI in future implementation and research. PPI members were involved throughout the lifecycle of the research programme. The PPI lead was a co-author on the manuscript and contributed to report writing.

Patient and public involvement in the development of clinical practice guidelines: a scoping review

ObjectivesOrganisations that develop clinical practice guidelines (CPGs) encourage involvement of patients and the publics in their development, however, there are no standard methodologies for doing so. To examine how CPGs...

Prioritising Informed Health Choices Key Concepts for those impacted by cancer: a protocol.

Background: Few areas of health have been as insidiously influenced by misinformation as cancer. Thus, interventions that can help people impacted by cancer reduce the extent to which they are victims of misinformation are necessary. The Informed Health Choices (IHC) initiative has developed Key Concepts that can be used in the development of interventions for evaluating the trustworthiness of claims about the effects of health treatments. We are developing an online education programme called Informed Health Choices-Cancer (IHC-C) based on the IHC Key Concepts. We will provide those impacted by cancer with the knowledge and skills necessary to think critically about the reliability of health information and claims and make informed choices. Methods: We will establish a steering group (SG) of 12 key stakeholders, including oncology specialists and academics. In addition, we will establish a patient and public involvement (PPI) panel of 20 people impacted by cancer. After training the members on the Key Concepts and the prioritisation process, we will conduct a two-round prioritisation process. In the first round, 12 SG members and four PPI panel members will prioritise Key Concepts for inclusion. In the second round, the remaining 16 PPI members will undertake the prioritisation based on the prioritised Key Concepts from the first round. Participants in both rounds will use a structured judgement form to rate the importance of the Key Concepts for inclusion in the online IHC-C programme. A consensus meeting will be held, where members will reach a consensus on the Key Concepts to be included and rank the order in which the prioritised Key Concepts will be addressed in the IHC-C programme. Conclusions: At the end of this process, we will identify which Key Concepts should be included and the order in which they should be addressed in the IHC-C programme.

The impact of Patient and Public Involvement in the SlowMo study: Reflections on peer innovation.

BackgroundThe SlowMo study demonstrated the effects of SlowMo, an eight‐session digitally supported reasoning intervention, on paranoia in a large‐scale randomized‐controlled trial with 362 participants with schizophrenia‐spectrum psychosis.AimThe current evaluation aimed to investigate the impact of Patient and Public Involvement (PPI) in the SlowMo study.MethodPPI members were six women and three men from Sussex, Oxford and London with experience of using mental health services for psychosis. They received training and met at least 3‐monthly throughout the project. The impact of PPI was captured quantitatively and qualitatively through (i) a PPI log of recommendations and implementation; (ii) written subjective experiences of PPI members; (iii) meeting minutes; and (iv) outputs produced.ResultsThe PPI log revealed 107 recommendations arising from PPI meetings, of which 87 (81%) were implemented. Implementation was greater for recruitment‐, data collection‐ and organization‐related actions than for dissemination and emergent innovations. Qualitative feedback revealed impacts on study recruitment, data collection, PPI participants' confidence, knowledge, career aspirations and society more widely. Outputs produced included a film about psychosis that aired on BBC primetime television, novel webpages and journal articles. Barriers to PPI impact included geography, travel, funding, co‐ordination and well‐being.DiscussionA future challenge for PPI impact will be the extent to which peer innovation (innovative PPI‐led ideas) can be supported within research study delivery.Patient and Public ContributionPlanned Patient and Public Contribution in SlowMo comprised consultation and collaboration in (i) design, (ii) recruitment, (iii) qualitative interviews and analysis of service users' experiences of SlowMo therapy and (iv) dissemination.

Patients’ perspectives on factors affecting their involvement in decision-making on oral anticoagulant therapy for stroke prevention in non-valvular atrial fibrillation

Abstract Introduction Acknowledging patients’ preferences and addressing their concerns is thought to improve patients’ satisfaction with consultations, resulting in improved adherence and health benefits [1]. Adherence to oral anticoagulant (OA) therapy in non-valvular atrial fibrillation (NVAF) is crucial to prevent AF-related strokes. Previous research on anticoagulation in NVAF indicated that decision-making was dominated by prescribers, but patients offered several therapy options reported being involved [2]. Identifying the patient’s perspective on factors affecting their involvement could help to deliver more patient-centred care in the management of AF. Aim To explore patients’ perspectives and experiences concerning factors affecting their involvement in decision-making about OA therapy for stroke prevention in NVAF. Methods Semi-structured face-to-face interviews were conducted with patients in three health economies in the North of England between August 2018 and April 2019. An interview topic guide based on narrative review findings [2] was developed and refined by a Patient and Public Involvement (PPI) group to ensure clarity. Theoretical sampling was used to recruit adults (>18 years) diagnosed with NVAF, prescribed OA (vitamin K antagonist or direct oral anticoagulant (DOAC)), and able to give written consent. Up to 30 potential participants were approached by a member of their direct care team (nurse or pharmacist) in secondary and primary care anticoagulation or arrhythmia clinics. PPI members recruited patients from a local patient support group. Data collection continued until data saturation was achieved. Audio recorded interviews were transcribed verbatim and analysed using the Framework method. Results A total of 21 patient with median (IQR) age of 73 years (65–78 years) were interviewed. Eleven patients took DOACs. The median (IQR) time of taking OA was 3 years (4 weeks-7 years), warfarin 7 years (3–9 years) and DOAC 1 year (4 weeks-4 years). Interviews lasted between 15 and 48 minutes (average 27 minutes). Three themes were identified during analysis (Figure 1). Patients described therapy decisions being made by just the clinician, jointly with the clinician, and in few cases by the patient alone. The lack of involvement resulted from patients perceiving that there was only a choice between accepting and refusing the therapy, and clinician’s role was to make decisions. Limited consultation times, lack of continuous relationship with a clinician and knowledge about OAs options discouraged patients from being involved and some patients reported difficulties with the prescribed therapy. Patients that were involved considered safety of therapy options and impact on daily life. Conclusions Limited consultation time, patient’s perception of clinician’s role, quality of patient-clinician relationship, and patients’ awareness of therapy options were main factors influencing the level of patient involvement in the decision-making. Support from both organisation and clinicians (e.g., longer consultations, availability of different therapy options) is needed to facilitate greater patient involvement, which could prevent difficulties encountered by some patients. The main strength of this study was recruitment of participants from three health economies differing in anticoagulation service provision models, which enabled greater insight into potential barriers. However, the sample was lacking ethnic diversity and could have potential of recall bias.

Involving service users in the Birth Timing project, a data linkage study analysing the timing of births and their outcomes.

IntroductionWe report on service user participation in a population-based data linkage study designed to analyse the daily, weekly and yearly cycles of births in England and Wales, the outcomes for women and babies, and their implications for the NHS. Public Involvement and Engagement (PI&E) has a long history in maternity services, though PI&E in maternity data linkage studies is new in the United Kingdom. We have used the GRIPP2 short form, a tool designed for reporting public involvement in research.ObjectivesWe aimed to involve and engage a wide range of maternity service users and their representatives to ensure that our use of patient-identifiable routinely collected maternity and birth records was acceptable and that our research analyses using linked data were relevant to their expressed safety and quality of care needs.MethodsA three-tiered approach to PI&E was used. Having both PI&E co-investigators and PI&E members of the Study Advisory Group ensured service user involvement was part of the strategic development of the project. A larger constituency of maternity service users from England and Wales was engaged through four regional workshops.ResultsTwo co-investigators with experience of PI&E in maternity research were involved as service user researchers from design stage to dissemination. Four PI&E study advisors contributed service user perspectives. Engagement workshops attracted around 100 attendees, recruited largely from Maternity Services Liaison Committees in England and Wales, and a community engagement group. They supported the use of patient-identifiable data, believing the study had potential to improve safety and quality of maternity services. They contributed their experiences and concerns which will assist with interpretation of the analyses.ConclusionUse of PI&E ‘knowledge intermediaries’ successfully bridged the gap between data intensive research and lived experience, but more inclusivity in involvement and engagement is required. Respecting the concerns and questions of service users provides social legitimacy and a relevance framework for researchers carrying out analyses.

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

ObjectivesWe aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.DesignWe used monitoring forms to record the...

Evaluating the impact of patient and carer involvement in suicide and self-harm research: A mixed-methods, longitudinal study protocol.

BackgroundPatient and public involvement (PPI) is becoming more commonplace in mental health research. There are strong moral and ethical arguments for good quality PPI. Few studies have documented and evaluated PPI in self‐harm and suicide research. Inconsistent reporting of PPI makes it difficult to discern practices that deliver quality, effective and meaningful involvement. It is important to understand and address emotional support needs of PPI members contributing to sensitive topics such as suicide and self‐harm. Therefore, this study will examine the effect of PPI on self‐harm and suicide research and explore patients', carers' and researchers' experiences and views in relation to the quality of PPI practice and provision of appropriate support for PPI members.MethodsThis protocol outlines the longitudinal, mixed methodological approach that will be taken. Qualitative and quantitative data will be collected via baseline and repeated questionnaires, document review and semi‐structured interviews. Both PPI members and researchers will be invited to participate in this study. The two‐year data collection period will enable evaluation of PPI throughout the entire research cycle. An integrated approach will be taken to data analysis, using inductive thematic analysis and descriptive and repeated measures analyses, to address specified study aims.DisseminationFindings from this study will inform practical guidance to support self‐harm and suicide researchers in effectively involving people with experiential knowledge in their research. Analyses will offer insight into the effect of PPI throughout the research process and assess changes in PPI members' and researchers' experiences of involvement across a two‐year period.

Co‐research with adults with intellectual disability: A systematic review

Co-research with people with intellectual disability is a distinct form of patient and public involvement (PPI). This systematic review summarize published studies and protocols to report on the process of co-research in social and healthcare research. Relevant studies were identified using electronic searches on ASSIA, PsycInfo and MedLine. Study quality was assessed, and information relevant to the process of working with co-researchers was extracted and thematically analysed. Thirteen studies were retrieved. Data are reported under three themes: (i) challenges of co-research; (ii) facilitators of co-research; (iii) benefits of co-research. Best practice is presented as a model of co-research. Content analysis on 12 research protocols identified four themes related to PPI. All stakeholders involved in co-research with people with intellectual disability can benefit, providing there is adequate infrastructure to accommodate and empower the co-researchers. Many current intellectual disability research projects still lack systematic involvement of PPI members.

Combining PPI with qualitative research to engage 'harder-to-reach' populations: service user groups as co-applicants on a platform study for a trial.

Plain english summaryIt is recommended that research studies are carried out with or by patients and the public through their involvement from the beginning and in as many stages as possible (known as PPI). Some studies formally invite patients and the public to participate in interviews and focused group discussions to collect views about topics (known as qualitative research). In our study on financial incentives for giving up smoking in pregnancy and breastfeeding, we combined both PPI and qualitative research to include the views of women with a range of experiences of smoking and breastfeeding.We involved two mother and baby groups in disadvantaged areas of North East Scotland and North West England as research partners on our team. First, we asked members to comment on our research plans and documents, which is standard PPI. Second, we asked members to participate in voice recorded discussions, contributing to qualitative research data. These discussions revealed different views from those that we heard through research interviews. They allowed us to develop more relevant research tools and resources. Members also helped us to identify people outside the groups who we could interview.Combining involvement and participation helped us to include the views of a wide range of women from ‘harder-to-reach’ groups who don’t usually take part in research. This was important because the research was intended for women who could benefit from incentives to stop smoking in pregnancy and breastfeed, often present in such groups. Positive continuing relationships and trust improved on involvement or participation alone.ᅟBackgroundPatient and public involvement (PPI) in all research studies is recommended from the earliest point and in as many stages as possible. Qualitative research is also recommended in the early stages of designing complex intervention trials. Combining both together might enable inclusion of ‘harder-to-reach’ perspectives from the target population(s), particularly when the research is intended for their benefit. However, the interface between PPI and qualitative research has received little attention.In a multi-disciplinary, mixed methods study to inform the design of incentive trials for smoking cessation in pregnancy and breastfeeding, we combined PPI and qualitative research, with some overlap. Mother and baby groups from two geographically separate disadvantaged areas, with diverse experiences of the smoking and breastfeeding, but no training or previous involvement in research, were recruited as PPI research grant co-applicants. An iterative partnership approach facilitated involvement in research conduct and design across all project phases. Group PPI members were also invited to contribute to more formal qualitative data collection, as and when indicated by the research questions, and emerging analysis.ResultsWe engaged with ‘harder-to-reach’ women in mother and baby group settings, rather than in academic or home environments. These settings were relaxed and informal, which facilitated rapport-building, disclosures of unexpected information and maintained trust. Twenty-one women participated in standard PPI activities: feedback on study protocols and documents; piloting questionnaires and interview schedules. PPI members voiced some different perspectives from those captured within the qualitative dataset. Nineteen participated in focused qualitative research. Novel aspects were audio recorded PPI discussions, which contributed qualitative data; first, to interpret systematic review findings and construct intervention vignettes for use in the qualitative research; second, to assist with recruitment to improve sample diversity in the formal qualitative dataset; and third, to translate theory and findings presented in a researcher generated logic model into a lay tool. This had face validity for potential trial participants and used the metaphor of a ladder.ConclusionsCombining and overlapping PPI and qualitative research added ‘harder-to-reach’ contributions, sample diversity, trust and engagement in creative approaches beyond what could be achieved through PPI or qualitative research alone.Electronic supplementary materialThe online version of this article (doi:10.1186/s40900-016-0023-1) contains supplementary material, which is available to authorized users.

Older care-home residents as collaborators or advisors in research: a systematic review.

Background: patient and public involvement (PPI) in research can enhance its relevance. Older care-home residents are often not involved in research processes even when studies are care-home focused.Objective: to conduct a systematic review to find out to what extent and how older care-home residents have been involved in research as collaborators or advisors.Methods: a systematic literature search of 12 databases, covering the period from 1990 to September 2014 was conducted. A lateral search was also carried out. Standardised inclusion criteria were used and checked independently by two researchers.Results: nineteen reports and papers were identified relating to 11 different studies. Care-home residents had been involved in the research process in multiple ways. Two key themes were identified: (i) the differences in residents' involvement in small-scale and large-scale studies and (ii) the barriers to and facilitators of involvement.Conclusions: small-scale studies involved residents as collaborators in participatory action research, whereas larger studies involved residents as consultants in advisory roles. There are multiple facilitators of and barriers to involving residents as PPI members. The reporting of PPI varies. While it is difficult to evaluate the impact of involving care-home residents on the research outcomes, impact has been demonstrated from more inclusive research processes with care-home residents. The review shows that older care-home residents can be successfully involved in the research process.

Exploring the impact of providing evidence-based medicine training to service users.

Plain English summaryWithin health services research in the UK, there has been growing interest in evidence-based medicine (EBM) and patient and public involvement (PPI) in research. These two movements have a common goal of improving the quality and transparency of clinical decision making. So far, there has been relatively little discussion about how these two movements might relate to each other, despite their common concern. Indeed, some in the PPI movement have expressed doubts about the implications of EBM for PPI because they worry that its emphasis on evidence from clinical trials marginalises the importance of a patient’s individual experiences in clinical decision making. The purpose of this paper is to examine the potential for EBM and PPI to complement one another.We analysed the feedback of 10 members of the Peninsula Public Involvement Group (PenPIG) who attended EBM workshops. These workshops trained people in the basics of EBM and were primarily attended by health professionals. We used thematic analysis, a qualitative data analysis method, to explore the responses. We found that participation in the workshops appears to have increased the ability and confidence of members of the public to actively participate as both producers and consumers of research evidence. We conclude that there is an untapped potential for EBM and PPI to complement one another in their shared desire to improve the quality and transparency of clinical decision making.Background Within the UK, health services research in the 1990s was marked by growing interest in evidence-based medicine (EBM) and in the potential of patient and public involvement (PPI) in research. However, there has been relatively little discussion of how these two developments might relate to each other, despite their common concern to improve the quality and transparency of clinical decision making. Indeed, some in the user involvement movement have expressed doubts about the implications of EBM for PPI. The purpose of this paper is to examine the potential for EBM and PPI to complement one another. Methods We used a case study design. Fifteen EBM workshops, involving PPI members, were conducted between June 2010 and December 2014. All 13 lay participants, who attended the first five workshops, were asked to fill in a standard feedback proforma designed by a member of the NIHR Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula (PenCLAHRC) Public Involvement Group (PenPIG). Ten responses were received, and these were analysed thematically. Results Four themes emerged from the thematic analysis: research knowledge, research skills, shared clinical decision making and learning environment. Participation in the workshops appears to have increased the ability and confidence of members of the public to actively participate as both producers and consumers of research evidence. Conclusions There is an untapped potential for EBM and PPI to complement one another in their shared desire to improve the quality and transparency of clinical decision making.

141. A Patient and Public Involvement Group Study on the Usability of the Myjointpain.org Website

Background: There are an estimated 4.7 million with knee osteoarthritis (OA) and 2.1 million with hip osteoarthritis in the United Kingdom. Resources to manage OA within the National Health Service are limited. National Institute for Health and Care Excellence guidelines advocate education and self-management for all people with osteoarthritis. Most recently E-health programmes via the internet are being used to deliver health services and information. . Arthritis Australia & Osteoarthritis Research Society International developed Myjointpain.org to support Australians in self-managing hip and/or knee joint pain. There is currently no equivalent UK e-health resource.. This study explored the attitudes, facilitators and barriers towards using e-health by people self-managing hip/knee OA in the UK. Method: A qualitative design using semi-structured telephone interviews was used. Patient and public involvement (PPI) members were recruited via Nottingham City Hospital. PPI members were included if they had Hip and/or Knee joint pain and internet access. Each PPI member was provided with an information sheet and consent form. All consenting members received a link to the Myjointpain,org website and given XX days to practice using the programme. Participants were then contacted for a telephone interview. The interviews were transcribed and a six step thematic analysis used. This included (1) Reading/re-reading of transcript, (2) Coding interesting features of data, (3) Categorising codes into potential themes/subthemes, (4) Reviewing themes, (5) Defining themes, (6) Producing final report. Themes identified were independently verified. Results:. Twelve PPI members wre recruited and contributed to telephone interviews. Overall PPI members were open to using an e-health initiative to self-manage their joint pain; Facilitators that encouraged PPI members to use Myjointpain.org included: . the interactive nature of the e-health programme; the personalised action plan, and participatns’ preceived trustworthiness of the content of the website. ,However excess information was reported as a barrier of use, as well as finding time to use the website due to busy lifestyles. The use of email/telephone prompting was thought may help people better engage with on line self management programmes. .. Conclusion PPI members with hip and /or knee OA in the UK report that they are receptive and open to considering using the Myjointpain.org web based e learning self management programme. Such an approach that emphasises personalised and interactive aspects to facilitate self management helps promote engagement with self management. Prompting is helpful in maintaining engagement (e.g. via e-mail) and provision of too much information may prevent people from engaging with the programme. Myjointpain.org presents an exciting opportunity for e-health strategies for people with arthritis in the UK.

OP0246-PARE Patients and Researchers Sometimes Think Alike: Patient Involvement in the Development of Quality Indicators for Osteoarthritis Care

BackgroundPeople with osteoarthritis (OA) desire high quality care, support and information about OA. Quality indicators (QI) can set minimum standards of quality of care for OA. Following a literature review,...