Table 2 Characteristics of the included papers (n = 56) from the systematic literature search extracted with the use of a modified GRIPP2-SF
Author/year | Aim | Type of document | Sampling strategy | Study population | People involved | Identifying and Prioritising | Commissioning | Designing and Managing | Undertaking |
|---|---|---|---|---|---|---|---|---|---|
Denmark | |||||||||
Timm et al. (2022) | Empirical | NA | Gestationel diabetes mellitus | Women with prior gestationel diabetes mellitus and their families | NA | NA | Involvement practices were adapted on an ongoing basis to secure meaningful engagement | NA | |
Christiansen et al. (2022) | To develop a model for systematic nurse-led consultations based on ePRO | Empirical | NA | Ovarian or endometrial cancer | Women with history of ovarian or endometrial cancer | NA | NA | Feedback on different materials | NA |
Bundgaard et al. (2022) | To initiate the debate about PPI | Non-empirical | NA | NA | NA | NA | NA | NA | NA |
Thomsen et al. (2022) | Describe the development through participatory design of a comprehensive transfer program targeted to parents of adolecents with chronic illness | Empirical | NA | Young people with chronic illness | Parents and young people with affiliation to outpatient clinics | NA | NA | Gave input to the intervention | NA |
Kjær et al. (2021) | To delvelop a core outcome set for intensive care unit patients | Empirical | NA | Intensive Care Units | Former intensive care patients and relatives | NA | NA | NA | NA |
Missel et al. (2021) | To explore patients' and spouses' perception and attitudes towards participating in a patient and family advisory council | Empirical | Convenience sampling | Relation to Dept. of Cardiothoracic and Vascular Surgery | Former patients and/or spouses | NA | NA | NA | NA |
Berring et al. (2021) | To learn about dynamics in a small group collaborative process influenced the the establishment of a research partnership | Empirical | NA | Persons who has attempted or who has died by suicide | Members of the cooperative inquiry group with experience of elder person who have died by suicide | Idea generation | NA | Formulated interview questions | NA |
Barot et al. (2021) | To investigate the inclusion of PPI in contemporary, large RCTs conducted in the ICU setting | Non-empirical | NA | Intensive Care Units | NA | NA | NA | NA | NA |
Hansen et al. (2021) | To investigate the extent to which patients and relatives were willing and able to be involved as fellow transitional care researchers while seeking relevant transitional care outcome measures and investigating patients’ views on care transitions | Empirical | Convenience sampling | Frail older patients | Frail older patients, relatives and HCPs | Identifying outcome measures for future research | NA | NA | NA |
Finderup et al. (2021) | To describe how patients were involved in a research project; To explain what occurred when patients were involved; To identify facilitators of and barriers to patient involvement in research and transform these into practical recommendations | Empirical | NA | Chronic kidney disease | Patients who participated in the final two years of the research case | Identifying and prioritizing research questions | Recrutiment through the Danish Kidney Association | Support planning of the project | Interpretation of findings |
Kirk et al. (2021) | To explore and discuss the key challenges associated with having stakeholders take part in the design of a health care intervention | Empirical | Maximum variation | Older patients | Health professionals, patients and relatives | NA | NA | Design the study process | NA |
Skovlund et al. (2020) | To explore ways to embrace the perspectives of patients in a research process, and the impact and challenges of collaboration on patients, researchers, and the research outcomes | Empirical | NA | Metastatic melanoma | Patient representatives | Prioritizing research questions | Choosing projects to fund | Choose PRO-measures for the dialogue tool and the research project, to compose patient information sheet, and to decide on a relevant design | Comprised a joint training day for researchers and PRPs, two consensus meetings, at which the codes were discussed, based on individual code-work done as homework, and an evaluation workshop |
Høeg et al. (2019) | To examine how involving patients with lower levels of education affected PPI in the development of a clinical trial from the perspectives of the patients, recruiting nurses and researchers involved | Empirical | NA | Breast cancer | Patients who had completed breast cancer treatment | NA | NA | NA | NA |
Beedholm et al. (2019) | To contribute to the approach dealing with contextual and structural factors of significance for patient involvement by demonstrating how inspiration from institutional theory widens our insights into the challenges of changing a hospital into a “patient involving hospital.” | Non-empirical | NA | NA | NA | NA | NA | NA | NA |
Piil et al. (2019) | To identify future research agendas that reflect the concerns and unexplored areas of interest for patients with life‐threatening cancer, their relatives and the clinical specialists during the cancer trajectory | Empirical | NA | Life‐threatening cancer | Patients, relatives and clinical specialists | Identifying future research agendas | Danish Brain Tumour Organisation and patient support organisation for lymphoma and leukaemia | NA | NA |
Nissen et al. (2018) | To present researchers experiences from a shared working group with patient representatives and researchers | empirical | NA | Breast or prostate cancer | Two patient representaives and researchers | NA | NA | Evaluation of interviews and discussion of program material | NA |
Jørgensen et al. (2018) | To investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment | Empirical | NA | Cancer follow-up care | Patients and patient representatives as peer interviewers | Workshop to discuss the proposal | NA | To form the development of th ePROM questionnaire | Interviewed peers |
Handberg et al. (2017) | To perform a secondary analysis discussing clinical and methodological aspects of patient involvement in clinical research and practice by investigating perspectives of patients and healthcare professionals on fertility treatment | Empirical | NA | Fertility treatment | Women undergoing fertility treatment | Prioritising research questions | NA | NA | NA |
Piil et al. (2016) | To identify, discuss and prioritise future research issues within supportive care and rehabilitation in patients with primary malignant brain tumours and acute leukaemia during the cancer trajectory | Non-empirical | NA | Primary malignant brain tumours and acute leukaemia | Patients, relatives and specialists | Prioritising research questions | Representatives from frelevant patient organizations | NA | NA |
Madsen et al. (2015) | To develop an understanding of how men experience ankylosing spondylitis | Empirical | Purposive sampling | Ankylosing spondylitis | One male patient diagnosed with rheumatic disease | Generation of ideas | NA | Development of interview guide | Feedback on the written patient informaiton sheet |
Norway | |||||||||
Solbakken et al. (2022) | To identify a pragmatic priority setting process to identify a prioritized top 10 list of research needs | Empirical | Convinience/snowball sampling | Stroke | Patients with stroke | NA | NA | NA | NA |
Gilhus et al. (2022) | The aim for patient involvement in Myasthenia Gravis research is to improve quality, increase research output and relevance, dissemination of results and secure implementation | Non—empirical | NA | Myasthenia Gravis | NA | NA | NA | NA | NA |
Jokstad et al. 2022 | To describe and reflect on the process and outcomes associated with advisory group-researcher collaboration from a person-centered approach | Empirical | NA | Older adults with health-related conditions | Older adults | Prioritising research questions | Older adults with health related conditions | The participants were asked to evaluare the proposed design of the study and were asked about their views of the guestion guide | NA |
Guise et al. (2021) | To investigate how involvement of patients and stakeholders in recilience in health care is described and improves | Non-empirical | NA | NA | Patients and other stakeholders | NA | Different patients groups | NA | NA |
Stuhlfauth et al. (2021) | To explore how guidelines construct the perception of users and researchers and thus the process of involvement | Empirical | NA | NA | NA | NA | NA | NA | NA |
Koren Solvang et al. (2021) | To determine what knowledge types and competences users apply when involved in the research process through user panel meeting | Empirical | NA | Rehabilitation service users | Rehabilitation service users and researchers | NA | Two disability nongovernmental organizations were contacted and asked to recruit panel members | Discussion of interview guide | Selected interview transcrips were discussed |
Slåtsveen et al. (2021) | To describe a way of applying NLR in a small-scale study and to address strengths and limitations of this way of employing user involvement | Empirical | NA | NA | Clinicians, organisations for service users and next of kin, members of senior citizens’ councils and the Patient Ombudsman | User involvement to devise research relevant questions for clinicians, service users and next of kin | Organisations for service users and next of kin, members of senior citizens’ councils and the Patient Ombudsman were invited to a workshop | NA | Themes were discussen and reorganized |
Sand et al. (2020) | NA | Non-empirical | NA | NA | NA | NA | NA | NA | NA |
Staats et al. (2020) | To formulate a framework for patient and informal caregiver participation in research— replacing the old focus of “them” as research objects, with focus on “us” as fellow researchers | Non-empirical | NA | Vulnerable people experiencing incurable life-threathening illness | Patients and informal caregivers | NA | NA | NA | NA |
Stuhlfauth et al. (2020) | To explore and describe how equity is constructed through the emerging storylines that users and researchers draw upon | Empirical | NA | NA | Users and researchers experienced in user involvement in research | NA | NA | NA | NA |
Stuhlfauth et al. (2019) | To investigate experiences and collaboration between patient representatives and researchers in user involvement in health research | Empirical | Snowball sampling | Disabled people | Researchers and patient representatives | Identifying reseach questions To lay the grounds for participation in the development project to discuss previous experiences from involvement in research through focus groups | NA | NA | NA |
Mjøsund et al. (2018) | To explore the process of involving mental healthcare research advisors in a mental health promotion project and to articulate features of the collaboration that encouraged and empowered the research advisors to make significant contributions to the research process and outcome | Empirical | Purposive sampling | Severe mental illness | Researchers and the research advisors | NA | Application for funding | Design of methodology | Analysis of data |
Mjøsund et al. (2017) | To examine how service user involvement may contribute to the development of IPA (Interpretative Phenomenological Analysis) methodology and in turn enhance the research quality | Empirical | NA | Severe mental illness | Five research advisors either with a diagnosis or related to a person with severe mental illness constituted the team | NA | NA | Advisory board of patients and relatives | NA |
Natland et al. (2017) | NA | Non-empirical | NA | NA | NA | NA | NA | NA | NA |
Tangvald-Pedersen et al. (2017) | To present an overview of three methodological standards and their respective dependency on three different ideologies or voices that advocate for user involvement and participant research; and to share experiences of designing a solution given these three voices | Non-empirical | NA | NA | NA | NA | NA | NA | NA |
Moltu et al. (2013) | To explore how service users experience their participation as coresearchers in ongoing mental health research projects and how their attendance at a training program in research methodology is experienced to influence this collaboration | Empirical | Purposeful sampling | Mental health service users | Coresearchers with service user background who had an interest in contributing to research and who had experienced mood disorders and recovery | NA | Patients with interest in participating in research | NA | The preliminary analyses back to the participants for discussion, auditing, and reanalysis |
Moltu et al. (2012) | To examine coresearchers lived experiences of what it is like approaching the academic world from a service user perspective | Empirical | Purposeful sampling | Mental health service users | Mental health service user who had an interest in contributing to research and who had lived experiences of mood disorders as well as recovery processes | NA | NA | NA | Discussion, auditing, and reanalysis. Themes were reorganized |
Kjeken et al. (2010) | Describe the research priorities of people in Scandinavia, their experiences and attitudes concerning participation in research projects, and which format for research information they prefer | Non-empirical | NA | Rheumatic diseases | Patients | NA | NA | NA | NA |
Sweden | |||||||||
Frögren et al. (2022) | To investigate the awareness of and attitudes towards public involvement in research on older people | Empirical | NA | Older people | Elderly people from a previos study | NA | NA | NA | NA |
Siira et al. (2022) | Description of online citizen panels | Non-empirical | NA | Cardiovascular diseases | NA | NA | NA | NA | NA |
Nyman et al. (2022) | To describe the process of using participatory action research | Empirical | NA | Rehabilitation | Patients undergoing home based rehabilitation | Deliniate the potential problems for research | NA | Discussing different solution for the intervention | NA |
Schandl et al. (2022) | To describe and evaluate the development of PPI in oesophageal cancer survivorship | Empirical | NA | Oesophageal cancer survivors | Mostly elderly men with cancer | Identifying purpose and setting | Gave perspectives on grant applications | Gave perspectives on study design | Interpretation of results |
Rudberg et al. (2021) | To determine which areas of research related to life after stroke that Swedish stroke patients and their informal carers consider to be relevant and valuable | Empirical | NA | Stroke | Patients and relatives | Prioritising research questions | NA | NA | NA |
Berge et al. (2020) | Explore frail old peoples experiences of involvement in research | Empirical | NA | Physically frail older people | Older people with experience of participating in randomized controlled studies | NA | NA | NA | NA |
Kylén et al. (2020) | To enhance the execution of high-quality research and to increase the knowledge about the added value stemming from user involvement in the research process | Non-empirical | Convenience sampling | Older people | People aged 60 years and older ; Informal caregivers ; Professionals within health care and architecture Researchers in aging and health | NA | Carer recruited from non gowermental organizations | NA | NA |
Warner et al. (2019) | To describe the group dynamic characteristics and impact of PPI from the user perspective in a case study of refugee involvement in health research | Empirical | NA | Mental health | Refugees with post traumatic stress | The refugee advisors discussed ideas of research with the researchers | NA | Gave impact to the designings and managing process by diskussing differrent alternatoves to the proposed design etc | NA |
Iwarsson et al. (2019) | NA | Non-empirical | Stratified sampling | Ageing people | Ageing people | NA | NA | NA | NA |
Acosta et al. (2019) | To establish the top 10 research uncertainties in AD using the JLA concept | Empirical | NA | Older people with disabilities | Patients and HCPs | Prioritising research questions | ADAS members and caregivers | NA | NA |
Kylén et al. (2022) | To examine researchers experiences and perspectives of user involvement in research on aging paople | Empirical | NA | Older people | Older people from the personal address register | NA | NA | NA | NA |
Kumlien et al. (2022) | To establish a priority setting partnership between participants and clinicians to identify the top 10 research priorities for preventing and treating diabetic foot ulcers | Empirical | NA | Diabetes mellitus | Participants living with diabetes mellitus and clinicians | Finding and prioritising research priorities | NA | NA | NA |
Malm et al. (2022) | To explore researchers' views of involving informal carers in health and social research | Empirical | NA | Disabled people | Researchers | NA | NA | NA | NA |
Malm et al. (2019) | To explore how carers perceived and reflected on carer involvement in Research and Development work, with specific reference to their personal experiences of being involved in the development of a Swedish carer strategy | Empirical | NA | Older people with disabilities | Informal carers | NA | Representatives from carer and patient organizations | NA | NA |
Bergsten et al. (2014) | To follow the working process of involving patients in a project group and to describe the research issues that were important from the patient’s point of view | Non-empirical | NA | Rheumatic diseases | Patients | Identification of research ideas | National patient organizations and research and development center in joint project | NA | NA |
Carlsson et al. (2006) | To explore PACP members’ and health care professionals’ experiences of collaboration | Empirical | NA | Cancer | Members of patient cancer associations and health care professionals | NA | NA | NA | NA |
Finland | |||||||||
Jones et al. (2020) | To explore how people become involved and how they construct the accounts of their lived experiences | Empirical | N/A | Mental illness | Patients living with mental illness | NA | NA | NA | NA |
Jones et al. (2017) | To describe and analyse the development of patient and public involvement from a policy perspective | Empirical | NA | NA | NA | NA | NA | NA | NA |
Author/year | Dissiminating | Implementing | Evaluating Impact | Methods used | Results | Methods to evaluate impact | Findings | Discussion and Conclusions | Reflections |
|---|---|---|---|---|---|---|---|---|---|
Denmark | |||||||||
Timm et al. (2022) | NA | NA | NA | Interviews | Involvement was sometimes percieved too timeconsuming and burdensome especially in thoses cases where the stakeholders suggestions were not adpoted | NA | NA | There is a need to further document the developmental work of intervention research | NA |
Christiansen et al. (2022) | NA | NA | NA | Advisory board | NA | NA | NA | NA | NA |
Bundgaard et al. (2022) | NA | NA | NA | NA | NA | NA | NA | NA | NA |
Thomsen et al. (2022) | NA | NA | NA | Interviews and workshops | NA | NA | NA | By incorporating the principles of particapatory design in the development phase the authors ensured that both parents and adolecents needs were represented and met in the program | |
Kjær et al. (2021) | NA | NA | NA | NA | NA | NA | NA | NA | NA |
Missel et al. (2021) | NA | NA | NA | Focus group interviews | Patients participatied in advisory boards because of Payback, personal invitation, safe and equal atmosphere and Sharing, caring, and healing | Focus groups | Participants described the inclusion in the council as an opportunity for them to thank and payback to the health-care professionals and the system for treating them when they were most in need | After undergoing surgery, patients and spouses express a need for “paying it back” to the health-care system by participating in an advisory council. When being part of this, the participants expressed feeling a genuine engagement and interest from the health-care professionals. They expressed how this leads to a feeling of being equal and taken seriously, though it cannot be ruled out that power differentials in the advisory council affected what the participants were willing to say | NA |
Berring et al. (2021) | NA | NA | NA | Interviews | NA | NA | The results highlight that a genuine partnership can grow out of a cooperative inquiryif all members of the group contribute equally to the research | The study shows how human flourishing grew out of the process of co-creating the interview guide and user-researchers became empowered change agents | NA |
Barot et al. (2021) | NA | NA | NA | NA | NA | NA | NA | NA | NA |
Hansen et al. (2021) | NA | NA | NA | Individual interviews Panel-based discussions | NA | HCPIC Health Canada Public Involvement Continuum | Patients ere involved in discussing care transitions (HCPIC level 3), while some relatives were engaged (HCPIC level 4) in forming PROMs. The partnership level of involvement (HCPIC level 5) was not reached | When applying a pragmatic involvement approach, frail older patients can be successfully involved in identifying relevant transitional care outcome measures; however, involving patients as fellow researchers seems infeasible. To maintain involvement, supportive relatives are essential | Involvement of patients, relatives and other stakeholders holds the potential to become an inherent and valuable part in geriatric, frailty and transitional care research studies |
Finderup et al. (2021) | NA | Ensuring the results were applicable to clinical practice | NA | Semistructured individual interviews | Eight facilitators and barriers were identified | Individual interviews | Patients experienced a sense of meaningful contribution to the research project The patient is not only a giver but also a receiver Both qualitative and quantitative studies as well as the SDM‐DC intervention benefitted from patient involvement. The patients themselves also benefitted from their involvement in the research. Important facilitators of involvement of patients with CKD in research include working as a team, being a part of a process, and being prepared for the work | Patients perceived themselves to be both givers and receivers who contributed to the research project but also gained something from the project. Patients experienced a sense of equal teamwork with the clinicians and researchers | Some phases of the research project with possibilities for more involvement. Neither of the patients thought that they could be a more active part of recruitment of participants and data collection than they already were. Important barriers to patient involvement include patient vulnerability |
Kirk et al. (2021) | NA | NA | NA | Workshops | Two themes emerged: A; Engagement refers to different challenges in recruiting stakeholders in the co-design process. B; Facilitation refers to different challenges for the research team with regard to changes in roles and activities. The theme engagement consists of two sub-themes: recruiting patients and involving physicians. Facilitation consists of three sub-themes: adjusting to a new researcher role; utilizing contextual knowledge and handling ethical dilemmas | NA | NA | Two key challenges associated with having health professionals, patients and relatives co-designing an intervention to increase mobility in older medical patients admitted to a hospital in Denmark were idenyified. The challenges were related to engagement and facilitation | It is not only patients and relatives who need to be prepared to be part of stakeholder engagement and design processes. Researchers who want to use co-design must be prepared for the extra time required and the need for “engagement literacy”, that is, skills concerning communication, facilitation, negotiating and resolving conflict |
Skovlund et al. (2020) | Meetings were held between PPI and one patient representative. This patient had been awarded a PRP scholarship to attend a conference together with the PI to present the work and thoughts on PPI. This PRP also engaged in the writing of the present article | Feed back from clinicians and discussions about implementing plan | Participate in the evaluation of clinical impact | Multiple sources of data: email correspondences, sticky notes, coding schemes, records of the proceedings, discussion-notes, and audio recordings from the evaluation workshop | The patients contributed with a new vocabulary and perspective on the dialogue, and they validated the results PPI caused considerations related to emotional (sadness/sorrow and existential thoughts), administrative (e.g. arranging meetings, balancing work and small talk) and intellectual (e.g. avoiding information harm, continuing activities despite the death of patients) investments | NA | The impact of PPI on PRPs, researchers and research outcome was qualitatively explored through all the above-mentioned sources of data, particularly from consensus on records of the proceedings and the workshop A limitation of the study was the lack of use of a solid evaluation tool to determine the impact of PPI | NA | NA |
Høeg et al. (2019) | NA | NA | NA | Focus group interviews Individual interviews | Patient feedback led to changes and improvements in recruitment strategy, brochures and educational material, the electronic platform created to collect questionnaire data, as well as helping researchers ensure that questionnaire items were generally understandable and not offensive. However, changes were not made to item wordings or answer categories in order to uphold the validation of the scales. In this aspect, the interests of research were privileged above those of the patients and we return to this in the discussion | The cube model | Our results highlight the complexities involved in integrating the patient perspective in the research process Successful patient involvement involves the dynamic interactionof patient and researcher knowledge, but this gives rise to many dilemmas | More specific guidance needs to be developed in collaboration with funders, researchers and patients, which includes how to manage the tensions between patient and expert priorities in specific research settings | This study has several limitations. The involvement of patients relatively late in the development of the trial and the use of semi-structured interview guides with predefined areas may have limited how researchers could use the patient input |
Beedholm et al. (2019) | NA | NA | NA | NA | NA | NA | NA | The theoretical framework on institutional logics provided concepts that extended our understanding of the challenges related to the implementation of patient involvement methods The examples indicate that if patient involvement—in terms of the efforts to consider the patient's perspectives, wishes and needs to the same extent as other parameters in the healthcare system—becomes a reality, it requires an independent analytical concept, such as a “patient logic” | An appropriate model for the development of the healthcare system of the future should be expanded with a fifth logic, a “patient logic.” Future research should contribute with a differentiated description of the characteristics of such a logic, and how it is incorporated in the balance of power between the existing institutional logics |
Piil et al. (2019) | NA | NA | NA | NA | New research agendas related to high‐grade glioma brain tumour and acute leukaemia with corresponding research questions were formulated within the topicsof supportive care/palliation, education/information, rehabilitation, complementary and alternative therapy and organization of health care | Likert scale evaluation | All participants fully agreed that they had shared the most important issues from their perspective, some elaborated on this and added that focus on caregivers and communication with the healthcare professionals is important aspects | User involvement within a qualitative approach can be a valuable method applied alone or together with Delphi studies and surveys in identifying research agenda User involvement in identifying research agendas has the potential to improve quality of care for patients and caregivers across the cancer trajectory, while minimizing the gap in research between the healthcare user and healthcare provider | A limitation was the small sample sizes |
Nissen et al. (2018) | NA | NA | NA | NA | To present evaluation data material was collected from meeting documents, interviews and fieldnotes | Qualitative | The changes in the program and the research project were related to user firendly wording of text and procedures adjusted for the specific cancer population | Describe the importance of researchers being clear of the purpose of involving patients | |
Jørgensen et al. (2018) | NA | NA | No firm conclusions could be made about impact on outcomes | Interviews | Interviewees were generally content with the process of having a peer interviewer present, and some had felt that being interviewed by someone with similar experiences had been very useful | Individual interviews | There are good arguments for using peer interviewers in qualitative health research | It is important to consider potential benefits alongside relevant ethical considerations, available resources for support of both peer interviewers and interviewees, and the need for training, not only in interview techniques, but also in reflexivity and professional/personal boundary work | |
Handberg et al. (2017) | NA | NA | As a result of PPI a RCT was cancelled | Focus group interviews | it became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research | Focus groups | The planned RCT study was canceled as a result of the focus group interviews and as such was a successful example that patient involvement can impact research designs | The study shed additional light on clinical and methodological aspects of patient involvement in clinical practice and research. Due to the logics and organization of healthcare, implementing patient involvement has been shown to be challenging. The kind of information and type of insight that can actually be obtained by asking patients about their perspectives, and how this information or insight may or may not strengthen the quality of research, treatment and care have not received extensive consideration | When involving patients, it is mandatory to take as the starting point the patients’ perspective and life world. Patient involvement is not achieved simply by inviting patients to participate in their treatment and care, and the research around it. It requires not only that healthcare professionals involve themselves in their patients’ everyday lives, but also that pathways are organized and decisions shared in a manner that promotes patient involvement in daily clinical practice A limitation that the data were not collected to address the particular research question of this article and that not all of the authors were involved in the initial data collection. This might have caused unawareness of study-specific nuances or glitches in the interviews that may be important to the overall interpretation. On the other hand, a new approach by new researchers may also ensure consistency and repeated discussion and validation of the findings, in line with the applied analytic methodology |
Piil et al. (2016) | NA | NA | NA | Focus group interviews | NA | NA | NA | NA | NA |
Madsen et al. (2015) | Dissimination of findings and commented the manus | NA | Enhanced and validated the study design from a patient perspective | NA | NA | NA | NA | NA | NA |
Norway | |||||||||
Solbakken et al. (2022) | NA | NA | NA | NA | NA | NA | NA | NA | The study highlights a prioritized top 10 list of research aims |
Gilhus et al. (2022) | NA | NA | NA | NA | NA | NA | NA | NA | NA |
Jokstad et al. 2022 | NA | NA | NA | Focus groups | NA | NA | NA | NA | Valuable ideas and knowledge would have been lost if the researchers had not embraced the idea of user involvement in the research |
Guise et al. (2021) | NA | NA | NA | NA | NA | NA | NA | NA | This is a protocol who have had PPI integrated in the funding process and have planned to include PPI throughout the whole research process |
Stuhlfauth et al. (2021) | NA | NA | NA | Critical analysis of documents as guidelines | The analysis indicates that users and researchers are constructed differently; researchers are mainly constructed as responsible initiators and caretakers, while users are constructed as powerless and vulnerable | NA | NA | The guidelines portray an unequal distribution of responsibility between researchers and users. Researchers are expected to lead the process, and their positions as the most powerful actors remain unchallenged. The described harmonizing, value-laden approach, resting on a (traditional) paternalistic discourse, may act to preserve the existing disparities in power between researchers and users described in the literature | The findings raise the question of whether the existing guidelines may function to reproduce dominant relationships within the collaboration process between users and researchers. Even though research guidelines are mainly portrayed in the literature as positive, it is important to recognize that different discursive formations of guidelines and policies exist, depending on the discourses that the actors draw upon, either consciously or subconsciously |
Koren Solvang et al. (2021) | Discussion of dissimination process | NA | NA | User panel meetings | The service users engaged as co-researchers, based their contributions on their respective personal histories, represented an NGO and peers, applied their respective professional and educational backgrounds and, finally, engaged as concerned citizens | NA | NA | The findings add to the discussion of professionalization of user involvement by introducing a wider array of positions enacted than do the findings of previous studies. Researchers recruiting user panel members, as well as NGOs appointing candidates for user panels, are advised to consider a wide competence profile for possible candidates. A panel is also considered as a resource in confirming and elaborating on a study's findings | An added value was the professional backgrounds in health and educational services held by two user participants They could contribute to member checking of the analysis of professional work from their positions as service providers. Based on these characteristics of the panel discussions, projects appointing user panels could consider the possibility of more actively including panel discussions as part of the methodological design Another limitation concerns diversity in the panel. The members were predominantly white and middle class. Their homogenous social backgrounds and professional careers might have restricted the scope of inputs to the research process. However, some panel members had stopped working because of the consequences of their respective accidents and the panel discussions often contained reflections on the interests of accident-injured people in more vulnerable positions than the panel members themselves were |
Slåtsveen et al. (2021) | NA | NA | NA | Steering group meeting Workshop Brainstorming session Online survey | The votes for the top 10 research questions were evenly distributed, all rating above 40%, and the question voted in second place was selected as the main question for this doctoral degree project | NA | NA | The steering group members could have actively participated in the process of thematising, interpreting and developing the questions in the interim priority setting. Inviting some of the steering group members or another representative to be a coauthor of this article could also have contributed to richer and more nuanced perspectives and experiences of this NLR process. This would raise issues such as increased time consumption, the question of financially compensating the members, and finding members with sufficient time and interest to participate in such processes | Consideration should be given to identifying input from the service users separately if conducting a similar process in a larger project and involving other relevant representatives from different cultures and languages In projects with a higher budget and thereby possibilities to provide honorariums to those who use their spare time for this kind of work, honorarium must be considered. This is not only for acknowledging the time, resources and expertise given to the project but also to create a sense of equality among the members In a relatively small-scale project such as the present study, where time and resources are limited, it was not feasible to reach more service users or to run a larger campaign to attract them Critics have argued that, despite its democratic intentions, this way of employing user involvement does not necessarily empower patients, since the researcher retains – and may choose to wield – her power to define what a legitimate research question is and how to answer it |
Sand et al. (2020) | NA | NA | NA | NA | NA | NA | NA | NA | When aiming at better use of PPI and thereby enhancing relevance and quality in health research, it is crucial to build a culture of mutual trust and a better understanding of the concept |
Staats et al. (2020) | NA | NA | NA | NA | NA | NA | NA | After discussing comments and recommendations, we decided to implement most of the patient and informal caregiver responses in our research strategy Utilizing PAICPAIR as inspired by the INVOLVE guidelines has improved research quality through patient and informal caregiver inclusion, training, and support | NA |
Stuhlfauth et al. (2020) | NA | NA | NA | Focus group | Participants stated they considered equity as a highly relevant and interesting topic | NA | NA | Users and researchers constructed equity in user involvement differently, but the difference was masked by an apparent agreement. Users and researchers drew on different storylines | The study revealed different perceptions about ‘equity in user involvement’ and implies that it is important to uncover and discuss these differences in collaboration processes |
Stuhlfauth et al. (2019) | NA | NA | NA | Focus group | The focus group discussion revolved around different storylines that were portrayed in an intertwined and interdependent way. The different positioning of the two parties was related to different responsibilities, rights and duties in the research process. However, users and researchers were preoccupied with different aspects of the topics | NA | NA | The positions that users and researchers assume and ascribe throughout the process are constantly changing. Different positions in the form of dissimilar rights and duties create power differences and these stand out as barriers in the collaboration process. The different positions might challenge an equal collaboration between users and researchers and it seems that the ideal of coproducing research is hard to reach | The relationship between equity in user involvement in research and power needs to be studied further to understand how dilemmas, contradictions and paradoxes in the research process evolve |
Mjøsund et al. (2018) | Abstract, poster, article, seminar production | NA | NA | Documents and texts produced while conducting the project, as well as transcripts from multistage focus group discussions with the research advisors, were analysed | The involvement of the research advisors varied throughout the different stages of the research process Features of the collaboration process were important for the research advisors to see themselves as valuable and competent contributors to the research process Six features are seen as guiding principles for a salutogenic service user involvement which promoted a structure and atmosphere facilitating research advisors to join the research team | NA | NA | Experiences from involving service users as research advisors in a mental health promotion project made us see the significance of the working environment A description of the Significant contributions from research advisors were promoted by facilitating the process of involvement. A supporting structure and atmosphere were consistent with a salutogenic service user involvement | Strength is the coauthorships with the persons involved as research advisors A team of research advisors can be a source of fun and energy, as well as enhance the research quality. Although the service user involvement in the project required extensive use of time to plan and manage the collaboration process. It may not be possible to overcome all barriers to service user involvement in all studies all of the time, but experiences might contribute to a more detailed understanding of how it can be achieved and thereby help improve the quality of service user involvement |
Mjøsund et al. (2017) | One person from the advisory board was a handy helper in posters, presentations and article production | NA | NA | Analysis of data from interviews. Discussions were audiotaped, transcribed and interpreted following the guidelines for good qualitative analysis in interpretative phenomenological analysis studies | The advisory team became ‘the researcher’s helping hand’. Multiple perspectives influenced the qualitative analysis, which gave more insightful interpretations of nuances, complexity, richness or ambiguity in the interviewed participants’ accounts. The outcome of the service user involvement was increased breadth and depth in findings | NA | NA | Service user involvement improved the research quality in a nursing research project on mental health promotion. The interpretative element of interpretative phenomenological analysis was enhanced by the emergence of multiple perspectives in the qualitative analysis of the empirical data | Researchers using qualitative methodology should adapt service user involvement in health and nursing research projects •Nurses in clinical practice and service users should be aware of the synergy and power of multiple perspectives brought into decision-making in nursing and healthcare research and development |
Natland et al. (2017) | NA | NA | NA | NA | NA | NA | NA | There is consensual agreement that the patient perspective helps supplement the perspectives of clinicians and researchers. Patient participation cannot be regarded as a mere alibi, but as equivalent in knowledge production to produce better health services through research. Here, we have emphasised that participation can be graded, and only the highest levels imply co-research. There must be room for a variety of approaches in research, and different stages of the project may be suitable for consultations as well as for collaboration (or even management) | An increased awareness of the many forms of user participation may help researchers see new opportunities for patient participation in the production of knowledge. If we explore the terrain, many opportunities may reveal themselves on the road from the ivory tower to the marketplace |
Tangvald-Pedersen et al. (2017) | NA | NA | NA | Qualitative interviews/narratives | The tinkering approach created a space for the participant researcher and the academic researcher to follow their respective courses of inquiry, thereby adopting different stances within participatory research. The approach created space for transparency of the research process and dialogue about the intermediate and end results of the study | NA | NA | Tinkering user research participation advances beyond mere opportunistic eclecticism. Embarking on any research project guided by the principles of a wellordered science implies involvement and negotiations amongst those concerned regarding the distribution of the financial means, the setting of the research agenda and the use of the research results | |
Moltu et al. (2013) | NA | NA | NA | Focus groups | Three core themes was identified that represent important coresearcher functions around which the participants developed a consensual understanding: the advocate for usefulness, the brakeman, and the interpreter | NA | NA | A practical implication of the categories we have found is that they equip researchers and service users with ideas for a potential mandate when collaborating to develop the coresearcher role, and suggest how this mandate can heighten the quality of the research process and outcome | There is increasing political will to involve service users in research, and some funding organizations expect such participation in research initiatives |
Moltu et al. (2012) | NA | NA | NA | Focus group interviews | The themes were: self-definition, constructive differentiation and negotiations | Focus group | The dynamics of group engagement was subsequently confirmed as high by the participants. The group dynamics of negotiating to reach a consensual understanding were salient on these occasions. Hence, the findings selected for presentation and discussion here were experienced as important by the participants, and they represent instances where the group moved toward a shared understanding | As researchers funded by academic research organizations, the authors of this paper are expected to present findings in scientific journals such as this one. One challenge here is that the service user coresearchers in the project might not be accustomed to using the English language. Moreover, the particular form of language used in journal articles is quite dense. Both these issues risk lessening the availability of the findings for the participant coresearchers. The findings suggest that this involvement may be seen as a continuous and challenging process that involves negotiating one’s own role and mandate as a service user in relation to the academic world of research We are of the opinion that there may be added value in the collaboration between professionals and service users in research on mental health, but see the process of continually reflecting upon these issues as essential for actualizing the potential that lies within these approaches | It may be of relevance to both service user led and consultative studies in which defining oneself as a coresearcher, constructively differentiating oneself from other academics as well as negotiating ones loyalty and influence, as presented in our themes, can be seen as important challenges and tasks for the service user coresearchers |
Kjeken et al. (2010) | NA | NA | NA | NA | NA | NA | NA | The surveys demonstrate that people with rheumatic diseases respond positively to participating in research and are highly competent at identifying important research issues. Participants had similar priorities for research The results indicate that willingness to participate varies, depending upon the aim of the study | Researchers should develop a patientfriendly study design, including routines to ensure that participants receive feedback on the study results Patients’ preferences for communication and dissemination of research also should be taken into account in future research projects Involving consumers as research partners is an effective way to enhance patient-centered research. To ensure good practice, existing principles and recommendations for successful consumer involvement should be used to guide researchers who are new to participatory research |
Sweden | |||||||||
Frögren et al. (2022) | NA | NA | NA | NA | Evaluation of participating in research in general | Lickert scale | Higher education is associated with with being actively involved in reasearch | NA | People with low education might not be as represented in PPI as people with low degree of education |
Siira et al. (2022) | NA | NA | NA | NA | NA | NA | NA | NA | NA |
Nyman et al. (2022) | NA | NA | NA | NA | NA | NA | NA | Participatory action research is an established method however the authors conclude that this method fail to explicitly demontrate the methodology | NA |
Schandl et al. (2022) | NA | NA | Validated the study design | Questionnaire | Discussion of PPI and researcher prespectives of the PPI process | GRIPP | GRIPP was used for reporting PPI | PPI improves the relevance of the research and facilitated the dissemination of research findings | NA |
Rudberg et al. (2021) | NA | NA | NA | The questionnaire was outlined and developed in accordance with earlier research in the area regarding patient involvement and adequate areas of research | The most prioritized areas of research were Balance and walking difficulties and Post-stroke fatigue | NA | NA | The potential to optimize life after stroke is vast and should be a frontier in stroke research. We found that the research areas most prioritized by the stroke patients differ with age and symptoms at stroke onset, indicating that rehabilitation strategies should be individualized and that this should be done already at discharge from hospital | NA |
Berge et al. (2020) | NA | NA | NA | NA | Evaluation of being a PPI in an RCT | Interviews | Gives new perspectives and knowledge to to be shaped in the encounter and relationshipbetween the researcher and the frail older person | NA | NA |
Kylén et al. (2020) | NA | NA | NA | A panel study will be implemented with different categories of knowledge users and researchers.A draft set of questions on attitudes and behavioral patterns related to research utilization and user involvement in research was compiled based on existing literature and input from the research team | NA | NA | NA | NA | The UserAge panel study will provide results that can be used to inform research funders and policy makers about the prerequisites needed to efficiently conduct research with user involvement. This can lead to more relevant findings to improve well-being in later life; improve the ability of research partnerships to benefit from diverse knowledge users’ local, lived, or applied knowledge; and jointly address the challenges of the aging society in the best possible way. Findings from the panel study may create conditions to improve approaches to involve knowledge users (eg, channels for recruitment, meet interests and expectations, handle barriers) to increase the quality and impact of research as well as give knowledge users participating in research a meaningful experience. In addition, knowledge derived from the panel study will contribute to the development of reliable and valid methodologies to evaluate research with user involvement |
Warner et al. (2019) | NA | NA | NA | NA | Interviews from the case study | Survey and focus groups | Relatively positive findings with positive interactions and invitations to participate and low levels of of ideas being ignored | The findings indicate a need for thorough PPI preparation | NA |
Iwarsson et al. (2019) | NA | NA | NA | Integrated in the management, a User Board and an External Advisory Committee composed of researchers and users give important input and monitor the overall development of the program | NA | NA | NA | NA | UserAge program is an example of a major research endeavor with potential to inform research with and about user involvement in research on aging and health. Taken together and communicated in the international scientific community as well as in a wide range of public and policy arenas, the empirical results, capacity-building, and modeling efforts will have an impact not only on the present situation but also on the future |
Acosta et al. (2019) | NA | NA | NA | Online survey questionnaire Workshop | Together with research priorities retrieved from five different current guidelines, 94 uncertainties were expressed A shortlist of 24 uncertainties remained after processing for the final workshop. After the priority-setting process, using facilitated group format technique, the ranked final top 10 research uncertainties were listed | NA | NA | These ranked top 10 important research priorities may be used to justify specific research in aortic dissection and to inform healthcare research funding decisions | Patient involvement resulted in a more effective research agenda regarding AD for better healthcare than if research uncertainties would have been prioritized by physicians and other caregivers alone The findingsare strengthened by the transparent joint JLA process involving both patients and caregivers. One limitation was the possibility of subjective opinions and experiences expressed by the steering committee members, which might have affected processing and prioritization |
Kylén et al. (2022) | NA | NA | NA | NA | NA | Survey | Different attitudes towards user involvement between the older population and the researchers | NA | NA |
Kumlien et al. (2022) | NA | NA | NA | NA | NA | NA | NA | This prority setiing partnership study finds a top ten list of research priorities that reflect a swedish context, but might not be appropriate for other countries | NA |
Malm et al. (2022) | NA | NA | Evaluated by researchers | Interviews | Discussion about a rationale for for a more limited involvement as too extensive involvement could hinder some people to participate | NA | NA | Involving people in too complex research studies might be too challenging for the participants | NA |
Malm et al. (2019) | NA | NA | NA | Individual interviews | Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy | NA | NA | Highlights the fact that involving carers in R&D work is complex and possesses several more unique aspects than user involvement in general, arising from carers’ basis in a family context and the carer identity. Due to varying prerequisites for involvement and differing needs for support, it is not feasible to have a general recipe describing how carer involvement can be realized in practice. Genuine carer involvement in research and policymaking demands a high level of engagement from all involved, otherwise there is a risk of carer involvement becoming tokenistic | Future research should seek the voices of carers who are not organized or who may be hard to reach, as well as explore the reasons why more female than male carers participate in R&D work, and/or further develop the CRAC framework Limitations included the relative lack of male carer participants and the convenience sample |
Bergsten et al. (2014) | NA | NA | NA | Focus groups | The inventory of research ideas and areas of importance from the patient perspective resulted in several aspects of living of a chronic disease being highlighted, mostly focused on the patient’s dignity, identity and quality of life An overview of research ideas and areas of importance from the patient perspective | NA | NA | NA | The involvement of patients could help researchers to stay in tune with patients’ needs.The involvement of the people who are affected by the diseases in the planning of their healthcare, as well asin the field of research, could be a way to develop healthcare in chronic diseases |
Carlsson et al. (2006) | NA | NA | NA | Open ended questions were mailed to participants | The responses to the question revealed four themes: the impact of processes that occur within the network, the impact of learning, the impact of innovation and development in cancer care, and the impact of PACP members’ personal cancer experience | NA | NA | The participants reported that relationships were formed and personal development occurred within the network. The major theme in both groups was the impact of processes that occurred within the network, but the PACP members also reported a greater knowledge and a decrease in feelings about possibilities of influencing health care | Networks and collaborations between PACPs and the health care sector are valuable, although PACP members and HCPs perceive them differently |
Finland | |||||||||
Jones et al. (2020) | NA | NA | NA | Interviews | NA | NA | NA | The stories that PPI experts tells are accounts to contruct to serve specific purposes | NA |
Jones et al. (2017) | NA | NA | NA | NA | NA | NA | Health policy documents often equate involvement with choice making by service users and customers; or as involvement in service development by experts. In both of these cases, involvement is depicted as an individual activity that requires personal responsibility and specialist knowledge. Although involvement opportunities have overall increased, they are primarily available to people that are “participation ready” and able to adopt roles promoted in policies | Health policy documents produce one interpretation of involvement, nevertheless it is important that diverse groups of patients, the public and health professionals participate in the discussion and express their views, which may differ from those of policy makers |