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Table 4 Study Characteristics: Dementia research

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

NIHR Research Process Reference Country Aim PPI term used Population Methods Study results Outcomes Discussion and conclusions outcomes Reflections/critical perspective Evaluation method Findings
Identifying & prioritising Alzheimer’s Society (2013) [17] UK To bring together a wide range of organisations representing the views of people affected by dementia, practitioners and clinicians to collectively agree on priorities addressing the care, treatment, diagnosis and prevention of dementia Priority setting partnership PwD, carers, and health and social care professionals • Consultation - survey • Workshop - Nominal Group technique Questions were prioritised by PwD, carers, and health and social care professionals to inform the future of dementia research NR NR NR NR
Identifying & prioritising Deane et al. (2014) [18] UK To encourage people with direct and personal experience of Parkinson's disease to work together to identify and prioritise the top 10 evidential uncertainties that impact on everyday clinical practice for the management of Parkinson's disease Priority setting partnership PwP, carers and former carers, family members and friends, healthcare and social care professionals • Consultation - survey and • Consensus meeting/ workshop• Steering group Identified the paucity of evidence currently available to address the everyday practicalities of managing a complex disease such as PD. These results will help funders identify future priorities for research that have greatest relevance to patients and the clinicians that treat them. NR NR NR NR
Identifying & prioritising Poland et al. (2014) [19] UK Carers and people with dementia to identify key issues for developing carer-relevant research projects Patient and public involvement workshop PwD and carers • Workshop using adapted focus group methodology Discussions highlighted the need to understand why health care professionals might not spend time listening to patients and carers so as to address their medication related difficulties and concerns Directly involving carers in specifying topics that matter to them, can greatly enhance the relevance and feasibility of research to develop effective interventions Involving health professionals into dialogue with carers in an extended workshop may have brought more perspectives to demonstrate the extent of difference in their experience, understanding and weighting of medications issues. NR NR
Identifying & prioritising Hassan et al. (2017) [20] UK To involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool, software platform and written guidance to support future studies Patient and public involvement PwD and cognitive impairments, carers and people without memory problems • Workshops• Drop-in sessions • Meetings Findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Lessons learned was the need to build in help with set-up and on-going technical support as part of future connected health dementia research studies, as well as support with operating the device itself It was feasible to involve patients and the public and use their insights to shape the development of a sensing platform for dementia research. Seeking feedback from a range of potential user groups meant that their requirements are accounted for NR NR NR
Design Paterson et al. (2005) [21] UK User participation in a pilot study to inform the design of any subsequent large-scale trial User participation PwP • Semi-structured interviews Service users assisted the team to create relevant outcome measures and helped with refining the design of the trial by advising on how best to explain the intervention to participants, helped the research team in defining the inclusion criteria and also highlighting an issues; relating to the time of the day when the interview is conducted with PwP’s, as people’s symptoms alternate during the day and are affected by their medication. The service users recommended that researchers assist participants to complete any questionnaires as people with Parkinson’s have may find it stressful to talk about their illness, and have problems with concentration and their eyesight Study confirms the benefits of involving users in the research process and makes recommendations concerning the design of any future randomised trial NR NR NR
Design Yates et al. (2015) [22] UK Service users’ involvement in the development of individual Cognitive Stimulation Therapy for dementia User involvement PwD and carers • Semi-structured interviews • Focus groups Informed the development of the second draft of the manual, sample materials presented were well received by both carers and people with dementia, valuable insight into the feasibility of the programme, identified potential barriers at an early stage Yielded valuable insight into the needs of service users for the iCST programme, and the importance of mental stimulation, both from the point of view of carers and people with dementia NR NR NR
Design Brooks et al. (2016) [23] UK Involved people with dementia as both advisers and participants in research about the use of life story work Advisers PwD • Individual meetings Advisers’ views on outcomes of life story work helped researchers with literature review, informed on ethical issues involved in doing focus groups with PwD, advised on information sheets and consent for PwD to ensure it’s clear and easy to understand, validated focus group findings from the first stage of the project. Informed on style of film for dissemination Partnership between the research team and Innovations in Dementia to set up a network of advisers ensured that people with dementia were able to contribute in a real and valuable way to the research. However, the process of using consultees was lengthy and complex NR NR NR
Design Sheree et al. (2017) [24] UK Evaluate the design against stakeholder requirements: obtain feedback from PPI representatives and clinical experts on the usability of the adapted therapy Patient and Public Involvement Parkinson related dementia and caregivers • PPI session The final version of the therapy manual incorporated feedback from PPI session. PPI input agreed that the intervention was easy to engage in the session and to stimulate conversation using the topic materials, and that the discussion was stimulating and interesting. Also agreed that the session content and images were clear and easy to understand, that there was opportunity to personalize the session and that they would like to do a similar activity in the future. NR NR NR  
Design Alan et al. (2016) [25] UK NR Patient and public involvement group PwD and Carers • Interviews Obtained feedback on the acceptability and feasibility of the toolkit, this was used to modify the toolkits prior to piloting NR NR NR NR
Undertaking / Managing Burnell et al. (2012) [26] UK To develop a peer support intervention for family carers of people with dementia by involving service users in research Involving service users PwD and caregivers • Modified Delphi process combined with a consensus conference• Anonymous reader consultation Intervention was renamed, the role of the carer supporter defined, information booklet less formal and presentation style changed Importance of involving service users in the development of complex interventions in making the intervention and consent documents as appropriate and feasible as possible to the target recipients Peer support among small reference group, virtual lay group accommodates members with mobility issues, PPI group as members of the steering committee – good practise involving carers with direct experience, involving carers face-to-face and virtually is invaluable in shaping a programme for the end user NR NR
Undertaking / Managing Littlechild et al. (2015) [27] UK Older people with dementia were involved as co-researchers and worked with academic researchers in all stages of the research process, exploring other older people’s experiences of transitions between care services Co-researchers PwD • Participatory approach Co-researchers worked in all stages of the research process, in planning and carrying out the interviews, although the academic researchers were conscious of the power they held in terms of resources and responsibility for the outcomes, they invested considerable time and effort into promoting equality in their relationships with the co researchers It is possible to involve older people with dementia in a meaningful way in research processes and that both co-researchers and participants can benefit significantly from their participation NR • Semi-structured interviews • Focus groups Co-researchers perspectives:Participation in the study was to ‘make a difference’, and had some advantages of ‘telling things as they are’. Personal benefits of involvement referred to gaining knowledge, enhancing skills, developing networks and new opportunities for involvement. The project helped them to own and affirm publicly their dementia identity in a way that they felt benefitted others, challenging negative expectations of both self and othersStatutory organisations’ perspectives:The feeding back of findings via the reading of narrative experiences was regarded as both powerful and refreshingVoluntary organisations’ perspectives:Co-research approach had led to fuller and richer data. Involving co-researchers with dementia was seen as challenging negative stereotypes Academic researchers’ perspectivesCo-researchers were sometimes sensitive to different issues, were more adept at ‘tuning in’ to participants’ communications. However, there was a tension between the data generated through the interactions of co-researchers and participants in the interviews and the data required to answer the research questions
Undertaking / Managing Mockford et al. (2016) [28] UK Setting up the research study with lay members as part of the research team Co-researchers PwD and carers • Discussions Developing ideas which are important to people living with memory loss, high levels of interest from volunteer groups. Organisational challenges were met in the requirement for research passports and with payment methods for the co-researchers. Training was beneficial but incurred extra costs for repeated training days Overall the benefits outweighed the challenges which were overcome to varying degrees. Buy-in to service user involvement in research studies could be improved by clarifying the requirements for NHS Trust approval and by simplifying the system for financial reimbursement to lay co-researchers. NR NR NR
Undertaking / Managing Swarbrick et al. (2016) [29] UK Development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia Co-researchers PwD • Participatory Action Research• Discussions Group members developed a more comprehensive compendium of themes of co-researcher involvement and engagement model. Each component of the model represents inclusivity, mutual respect and empowerment which are at the very core of the Neighbourhoods and Dementia Study Developed the co-researcher involvement and engagement in dementia (COINED) Model, and identified ways in which people living with dementia wish to be involved as co-researchers in the research process. NR NR NR
Undertaking / Managing Giebel et al. (2017) [30] UK To develop a dementia toolkit, synthesising the evidence for home support and involving patient and public throughout the programme Public involvement PwD, caregivers and public members • Small reference group • Virtual lay advisory group Feedback on the proposal, protocol and research design of the suggested programme, agreed proposed research, amendments made to interventions, contributed towards devising a model using specialist software, contributed to the evidence synthesis components, revision to patient pathway – economic model, amendment to participant information sheet, case vignettes agreed on Virtual lay advisory group allows access for anyone regardless of location and is less time consuming. Involving carers and patients both face to-face and virtually to shape both the design and methods of data collection has proven an invaluable source of knowledge to adapt studies of the programme better to the real-life experience of patient and public NR NR NR
Undertaking / Managing Schipper et al. (2014) [31] Netherlands Patients with Parkinson’s disease were engaged to list priorities for research to complement the professionals’ research agenda Engaged PwP and a spouse of a patient with PwP • Interviews • Focus groups • Questionnaire • Voiceover group meetings Developed a shared research agenda, prioritised the research topics, research process, commented on preliminary findings NR NR NR NR
Undertaking / Managing Morgan et al. (2018) [32] UK To collect Research Network volunteers and researchers perspectives to understand and demonstrate the real impact of the Research Network Research Network volunteers PwD and carers • Lay reviewer• Monitor• Grant Advisory Panel lay member• Grant Advisory Board lay member• Research Strategy Council lay member• Research Network Area Coordinator A series of detailed case studies, demonstrating the range of mechanisms through which impact is achieved on volunteers, on researchers, on research and on Alzheimer’s Society PPI was seen as less influential in biomedical research than in care research. However, case studies demonstrate Research Network can contribute to communication,accessibility and research impact in biomedical research. NR • Online survey• Semi-structured interview or group interview 1. Impact on volunteers - Network volunteers share motivation to make a contribution to dementia research and, ultimately, to improve life for people affected by dementia. For several volunteers, involvement in the Research Network have led to further opportunities for involvement in dementia research2. Impact on researchers - Insight from volunteers helps to validate current ideas and inform the future focus of researchers work, and to focus on the long-term impact of their body of work. Improved researchers written lay communication skills and understand more about how people understand and interpret their work. This has particular benefits for early career researchers:3. Impact on research - Changing methodology, supporting ethics approval applications, ensuring that the outcomes of research produce useful benefits for people affected by dementia has led to change in research focus.4. Impact on Alzheimer’s Society - Ensured consensus, accountability and allowed Research Network to reach a consensus that is representative of the diverse views
Undertaking / Managing Iliffe et al. (2013) [33] UK Describes the extent of PPI in research within the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN), in terms of PPI activity at the different stages of the research cycle and within the different levels of the research network. Includes three case studies in which centrally managed PPI was called on to assist three research studies conducted within the network. Patient and public involvement Patients, carers and public • PPI panels • DOMINO‐AD study - PPI advised to promote the study more effectively in primary care and to make GP referrals of patients into the study easier, by informing practices of the study and inviting them to engage with the research team and identify potential participants. This had a positive impact, recruitment rates increased within the 2 sites after PPI consultation on recruitment issues, in comparison with all other DeNDRoN recruitment patterns for the DOMINO‐AD study.• MUSTARDD‐PD - PPI reviewers recommendation was that the word ‘dementia’ should be used less and be replaced by terminology which pertained to the range of potential symptoms and signs; the study team found many suggestions as valid and constructive and that they would be making changes to their documents as a result of the consultation process with the PPI reviewers.• RESULT - Members of the PPI reference panel contributed to designing a systematic review of literature and available data, reviews of GP records and hospital databases, and economic modelling of disease progression and cost at different stages. PPI representatives had a significant role in the final stage of the study. A questionnaire was developed with help of the patients and carers on the reference panel, and approved by an ethics committee, which allowed lay people to review the intended outcomes of studies, dissemination plans and implementation strategies. More specific written guidance is needed to optimize the contribution of PPI in clinical research at all stages from design to implementation. Guidance should contain clear information about the level of support that is on offer for study teams, practical advice about PPI methods, and details of the resources available and advice on what resources will be needed The three case studies exemplify how centrally managed PPI can contribute positively to clinical research, in different ways. The benefits of PPI in these studies were perceived positively by both research network staff and researchers, as they solved problems identified by the research teams themselves. NR NR
Analysing & interpreting Bunn et al. (2015) [34] UK To test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia Involving service users Patient, public and professionals • Focus groups • Semi-structured interviews Findings from the focus groups and interviews were consistent with those from the systematic review The involvement of service users and practitioners allowed a more nuanced understanding of the systematic review data NR NR NR
Analysing & interpreting Martin et al. (2015) [35] UK To give members of the public the opportunity to offer their perspectives and to comment on the findings of a systematic literature review looking at attitudes and preferences towards screening for dementia Patient and public involvement Event Public members and carers • Patient and public involvement Event 23 key themes emerged. PPI exercise suggest the acceptability of screening is dependent upon a variety of factors including personal beliefs, experiences and attitudes to health Inclusion of lay participants in the analysis and the writing of the article was helpful because it allowed for the research team to confirm their interpretation of the discussion NR NR NR
Analysing & interpreting Stevenson et al. (2017) [36] UK Involving individuals with dementia as co-researchers in a qualitative analysis Co-researchers PwD • Sessions involved in deriving meaning from the data, identifying and connecting themes The analysis generated additional sub-topics for exploration in subsequent interviews. The session also led to development of ideas for dissemination of findings. Involving users with dementia in analysis impacted on the overall quality of the study by allowing for inclusion of multiple perspectives in interpretation of findings and generating new insights to be explored in further interviews NR • Open-ended questions in a paper format Usefulness of the role-play exercises as an opportunity to ‘actually think about a situation that happened to someone else’. Benefitted from taking part in an activity that required them to reason, use their cognitive abilities, meet with others of similar ability and hear the opinions of other people with dementia.
  1. *NR Not reported