Table 3 Characteristics of sources (n = 56) from the gray literature search based on origin and institutions
Institution | Type of document* | Purpose | Findings and/or conclusion regarding PPI | Target group | References |
|---|---|---|---|---|---|
Denmark | |||||
Ministries Ministry of Health | Announcement of application of pool | The pool is targeted gathering knowledge about methods, implementation and dissemination of initiatives that strengthen patient and relative involvement | NA | Healthcare professionals and managements in regions, municipalities, patient associations, knowledge centers etc. as well as citizens and patients | (1) |
Ministry of Education and Research | Catalog of the National research strategic announcement | The FORSK2025 process must provide a consolidated overview of the most important research areas of the future. It will provide a basis for the political prioritization of strategic investments in research It is the hope that the catalog will also serve as inspiration in the work of prioritizing research funding and / or strategic focus areas on e.g. universities, artistic educational institutions, MVUs, business academies, GTS institutions and in public and private funds | The catalog is the result of a comprehensive mapping and dialogue process An essential path to achieve socially value creation is through research collaborations where disciplinary boundaries are being crossed, and users involved In this context, it is important that the research focuses on the users' research needs, which increases the likelihood that new knowledge quickly finds solid use in the business and the public sector | Business community, organizations, municipalities, regions and ministries, knowledge institutions and a wide range of other stakeholders | (2) |
Universities University of Southern Denmark | Ph.D. course | Patient and public involvement (PPI) in Research and previous PhD course in PPI (M Hørder co-organizer) The aim of this course is to introduce the concept of PPI and take an analytical and critical view on the processes and potential outcomes of PPI. The course will focus on the various kinds of barriers that the researcher meets when she/he decides to involve patient representatives in research projects. There will be a special focus on the role of researchers, on the role of patient representatives and the interaction of patients and researchers that constitutes PPI | NA | Ph.D. students enrolled in the Faculty of Health Sciences at SDU, as well as employees at the Faculty of Health sciences at the University of Southern Denmark | (3) |
University of Southern Denmark | Lecture | Experiences and considerations regarding boundaries for meaningful patient involvement in research | NA | NA | (4) |
University of Southern Denmark and Knowledge Center for User Involvement (VIBIS) | Report | The patient as a partner in Danish health research: Knowledge sharing and mapping of patient involvement in research in Denmark | A crucial barrier is to translate the strategic initiatives into visible traces in the concrete research projects. There is a need for managerial and other support for researchers and research leaders. First and foremost, through learning that can happen in many ways, but most successfully by establishing collaborations and networks with other researchers at home and abroad It has therefore also been the intention of the knowledge sharing project to establish lasting network collaboration with the dialogue partners we have met at the strategic level (research institutions, foundations, etc.) and at the project level. There have generally been positive indications of wanting to join such a forward-looking network collaboration Although implementation has been initiated and promoted—e.g. through the knowledge sharing project—it will be crucial over the coming years to anchor processes more broadly and in a more structured way, as well as not least to coordinate and evaluate the efforts To ensure such continued implementation, coordination and evaluation, a "National Network for Patient Involvement in Health Research" will be the right tool | Researchers | (5) |
University of Southern Denmark | Article | Information on the involvement of patients in research | The prevalence is increasing. A story about PPI | Researchers and health professionals | (6) |
University of Southern Denmark | Article | Patients as partners in research: The challenges for researchers of patient involvement | NA | NA | (7) |
University of Southern Denmark | Article | The researcher's perspectives on patient involvement in research | NA | NA | (8) |
University of Southern Denmark | Webpage | To improve the health and well-being of patients and relatives and their experience with the health system by conducting health research in collaboration with patients and relatives | NA | Healthcare researchers | (9) |
Aalborg University | Workshop | Opportunity to gain insight into and discuss experienced Danish senior researchers' experiences with user / patient involvement | NA | NA | (10) |
Aalborg University | Discussion paper | Discusses how citizens’ social position may matter for co-creation in health research by drawing on relevant research literature | Focuses on the risk in patient and public involvement of reproducing health disparities through co-creation of knowledge | Healthcare researchers | (11) |
Aarhus University | Webpage | Providing a forum for people from different organizations to collaborate on patient involvement intervention research, training and implementation ResCenPI's activities relating to involving patients as partners in research: 25 + researchers are conducting research with patient partners | NA | People from all health-related stakeholder groups | (12) |
University of Copenhagen | Debate | Patients must be involved in medical research | NA | NA | (13) |
University of Copenhagen | Ph.D. course | To introduce the concept of PPI. Teachers included both researchers and patients | NA | Researchers | (14) |
Patient organizations and funding bodies Danish Patients | Arrangement | Can patients and relatives be involved in the research process? What can it contribute? And what significance does it have for the research process? The focus is on the "patient's premises" | NA | Danish patients | (15) |
Danish Patients | Debate | But it is extremely important that the strategy is not “only" a growth strategy, because then we risk that the potential is not realized, and on the contrary leads to a development that does not benefit the patient and the citizen. The core of the strategy should be to create value for the patient. We must ensure that patients and citizens actually benefit from the development. The strategy should therefore have a strong focus on the involvement of patients and citizens—and of course health professionals, who together with the patient and the citizen must use the technologies | Involvement of patients and healthcare professionals is necessary to create value | Danish patients | (16) |
The Danish Cancer Society | Policy | To involve patients in the research process | Involving patients in decision-making processes about research prioritization and scientific assessment of research helps to ensure that the research focuses on the topics and issues that are most important to Denmark and the cancer patients—and not only on the topics and issues that only seem interesting from the researchers' perspective. The Danish Cancer Society has therefore decided that cancer patients must always participate in scientific assessment committees | Cancer patients in Denmark | (17) |
Research Panel | Information | The research panel is a Danish voluntary patient community that aims to promote research and development of new treatment in Denmark through participation in clinical research | The research panel is a Danish voluntary patient community that aims to promote research and development of new treatment in Denmark through participation in clinical research | Patients in Denmark | (18) |
The Danish Cancer Society | Information | Research, Annual report 2021 | In 2020, the Danish Cancer Society's Center for Cancer Research got its own panel of patients and relatives. It brings patients and relatives closer to the research and incorporate their perspective, experiences and input into concrete research projects The panel consists of nine patients and relatives, who meet twice a year with researchers who presents them with concrete research projects and asks a series of questions | Politicians and contributors as well as researchers | (19) |
Danish Heart Foundation | Recommendation/ value set | Practical recommendations, including processing of applications, purpose of user involvement, where in the research process users can be involved and recruitment of users | User involvement is an assessment criterion in applications for support. There must be a plan for user involvement in the specific research project or an explanation of why user involvement is not an option or is not relevant in the project in question The purpose of user involvement in health research is among others to increase the relevance and value of research results for users and to increase the societal impact of research | Researchers (applicants) | (20) |
Novo Nordisk Foundation | Recommendation/ set of values | NA | NA | Researchers | (21) |
Trygfonden | Set of values | Research strategy | The research challenge in patient involvement is twofold. First, models for user involvement that can be developed and tested integrated into daily practice, and which makes immediate sense to both patients and therapists. Second, there is a need to develop a better understanding of the areas in which comprehensive patient involvement can raise the quality of a treatment | Researchers | (22) |
The Danish Kidney Association´s research fund | Policy | NA | Criteria: The research must be initiated by or in collaboration with kidney patients. The research must involve patients | NA | (23) |
Velux Foundations | Recommendation/ set of values | NA | Research with user involvement can be ensured, for example, by users being included as co-researchers, as part of the steering group, or in panel participation, all of which continuously contribute with relevant perspectives on the research work. They can take an active part in part or all the research, from the formulation of the project idea to the formulation of the conclusions, and even contribute to the scientific dissemination | NA | (24) |
Research strategies for health research Steno Diabetes Center | SDCC's Guide to User Involvement in Research Projects | A practical guide for researchers in how to involve users in the planning and development of research projects | A practical guide to involving patients in research | Researchers | (25) |
Central Denmark Region/ Aarhus University Hospital | Regional strategy for research in the field of health | Strategy to be realized in an action plan | Strategy to be realized in a regional action plan | Researchers | (26) |
Region Zealand | Policy for health research 2019–2022 Guiding visions for the regional council strategy | Vision to develop a healthcare system on patients' terms by involving patients and relatives in a strong partnership | Goals are; Regional research councils are attached to the patient and relatives' representative, Research funds are awarded with requirements for patient involvement, Models are developed for best practices for patient involvement in research | Researchers | (27) |
North Denmark Region /Aalborg University Hospital | Health research Strategy in the Region North Jutland 2014–2018 | Strategy for research | At the same time, research organizations need to be strengthened with it purpose of establishing research collaborations in interaction easily between hospitals, general practice, the municipalities and the patients themselves | Researchers and health professionals | (28) |
The Capital Region of Denmark | Document | Strategy for research | To prioritize and strengthening patient involvement in research—both in identifying research questions and in following up on the perceived effect and value of treatment and trajectory | NA | (29) |
Hvidovre Hospital | Strategy for research | Strategy for research | Focus area on patient involvement | Researchers and health professionals | (30) |
Norway | |||||
Ministeries The regional health care institution Helse-Sør Øst RHF | Announcement of application of pool | A plan for user participation must be included as an element in the project description and will be part of the application assessment. The project description must explain the extent to which users are involved in the planning and implementation of the project, or why this is not appropriate | NA | Researchers | (31) |
National program for clinical treatment research (owned by the four regional health care institutions; Helse Sør-Øst, Helse Vest, Helse Nord and Helse Midt-Norge) | Report | The program seeks to safeguard the user perspective in research, and user participation is therefore made mandatory for all projects. The the overall goals for user participation in clinical studies are to contribute to increased utility, better quality and greater relevance for the health service | All projects which are allocated funds must facilitate the inclusion of patients from all four health regions. Since 2016, over NOK 850 million has been distributed to 48 large, national clinical treatment studies. The projects benefit Norwegian patients. opportunity to try out new and promising treatment. So far there are over 16,000. Norwegian patients have been included in clinical treatment studies in the program portfolio, and the inclusion of new patients is ongoing | NA | (32) |
The regional health care institutions (RHF) | Report | Report about ongoing research and innovation activities in the specialist health care | Of the projects who have received regional funding, 61 percent of the research projects report that users have participated in the planning phase. The users have also participated in execution of projects, dissemination of results, through user panels and in steering or reference groups For research projects 60 per cent of users come from user and patient organizations | Healthcare professionals and managements in state, regions, municipalities, patient associations, knowledge centers etc. as well as citizens and patients | (33) |
Universities University of Bergen | Ph.D. course description | The course is designed to facilitate patient and public involvement in medical and health research | Spread knowledge regarding PPI within research Being able to assess and convey the added value of patient and public involvement and initiate productive user involvement in own research projects | The course is open to researchers, postdocs, students (PhD, master, students in the Medical Student Research Program) and others who are interested | (34) |
University of Bergen | Course | The main objective of the course is to develop the participants’ capacity to assess and convey the value of patient and public involvement in general, as well as promoting productive user involvement in participants’ research projects | The course aims at creating a platform for competence development and networking across professional- and user roles, facilitating communication and sharing of experience from multiple perspectives | The course is a collaboration between Neuro-SysMed and the Centre for Cancer Biomarkers CCBIO, initiated by Neuro-SysMed in line with their strong focus on patient participation In addition, 18 patient representatives attended the course | (35) |
University of Oslo | Webpage | To promote patient involvement in rehabilitation related research in Norway | The project involves a systematic gathering of information from service users regarding their experiences and expectations, which will form the basis of the development of a guide that can be utilized to facilitate patient involvement in research | Researchers | (36) |
University of Stavanger | Report | The aim of this strategy is that patient and stakeholder involvement (PSI) becomes an integral feature across all stages of the research process in all SHARE affiliated projects, from prioritization and planning, management, and conduct, to the dissemination of findings and implementation of change based on results | Genuine patient and stakeholder involvement can improve research quality and the relevance of research themes and outcomes | Researchers and PhD students at SHARE research projects, including PhD projects. Guidance, organizational policies and training on PSI for researchers will be developed | (37) |
NTNU – Norges Teknisk-Naturvitenskapelige Universitet | Webpage | The HUNT Study is a longitudinal population health study in Norway. They write that: We are completely dependent on HUNT participants' experiences and input to uncover needs, solutions, and challenges. That is why participants are involved in all our investigations, from the planning stage to the final evaluation | NA | Researchers and service users | (38) |
NTNU | Webpage | The research group for patient education and user participation (PEP group, from Patient Education and Participation), researches the perspective of patients/users in the health service and what promotes a patient-centered and learning health service. We are a broadly composed research group with participants from various fields and institutes | NA | Researchers and service users | (39) |
University of Tromsø | Webpage | Young people with mental health challenges participate in research. The aim is to improve the services they themselves need | In the project SunRise, young people from Goza and Tromsø are included in all project phases. The young people have been involved from the very beginning when the research applications were designed, to reference groups along the way. At the end, when the project is to be evaluated, they also get involved | Researchers and service users | (40) |
Oslo Metropolitan University | Webpage | The bridge-building initiative at the Faculty of Health Sciences aims to link research, education, and clinical practice more closely together. By identifying the needs of the users, we must ensure that research and education are relevant and beneficial to society. Need-leed research must answer questions that have not already been answered through previous research (knowledge gaps) and whose relevance has been legitimized and prioritized by patients, relatives and/or healthcare personnel. The process will also identify so-called "unknown knowns", i.e. questions that have been answered through previous research, and which represent knowledge that can be transferred to users and fields of practice | The bridge-building initiative comprises several research projects, all of which are based on the principles of needs-identified research | Researchers and service users | (41) |
VID vitenskapelige høgskole, Fakultet for helsefag Høgskolen i Innlandet. Fakultet for helse- og sosialvitenskap, OsloMet – storbyuniversitetet, Fakultet for helsevitenskap | Book | The purpose of the book is to reflect critically on user participation in research | The anthology has its origins in the authorities' increasing expectations and demands for user participation as part of the work to democratize and increase the utility of health and welfare research The main part of the book's chapters is based on concrete projects where co-production of knowledge between researchers and other actors has been central | Researchers, PhD, and master's students, but also user organizations and services that participate in health and welfare research | (42) |
Høgskolen i Innlandet. Fakultet for helse- og sosialvitenskap | Webpage | Research group: Co-creation in research and service development. The research group consists of both researchers from the university and people with user experience. The research has particularly been aimed at people with mental disorders and the disabled | Several relevant research projects: such as: "Making user participation work", financed by the Norwegian research councils’ program for health- and care services | Researchers and service users | (43) |
Patient organizations and funding bodies The research council | Portfolio plan for the health care sector | The portfolio plan is based on the government's long-term plan for research and higher education and The Research Council's strategy, and it is operationalized through investment plans and announcements. The portfolio plan basically applies in a 5–10-year perspective and was completed in 2022 | User involvement and user participation are important priorities in the health portfolio and a requirement in many announcements. Users of health and welfare research ranges from politicians, health authorities, the health, care and welfare services, including healthcare personnel, and the healthcare industry for residents (citizens), patients and patients and user organizations | Government and researchers | (44) |
The National Association for Public Health | Action plan for the National Association for Public Health (2022–2026) | Aim to contribute to user participation in research in both dementia, heart and vascular disease and wider public health research | NA | NA | (45) |
Research strategies for health research Regional health enterprises | A guide to User Participation in Research Projects | A practical guide for researchers in how to involve users in the planning and development of research projects | A practical guide to involving patients in research within the specialist care services | Researchers and service users | (46) |
The cancer union and the Dam foundation | Guide | A guide for researchers on how you can include users in research projects | A practical guide to involving patients in research | Researchers and service users | (47) |
Sweden | |||||
Ministeries The National Board of Health and Welfare | National action plan for increased patient safety in Swedish health care 2020–2024 | The Action Plan aims to strengthen the staunch work of the principals in the systematic patient safety work and to help prevent patients from suffering from adverse events. The Action Plan shall also support and coordinate work on patient safety across the country | A chapter regarding the patient as co-creator | The Action Plan is developed in broad cooperation with authorities, representatives from principals and national organizations, representatives of private caregivers, patients and relatives, experts, and students and other stakeholders in patient safety | (48) |
Universities University of Uppsala | Ph.D. course description | Patient and public involvement in research | The overall goal of the course is to build a basic understanding of PPI in health research. Further, the course will provide students with a simple toolkit to facilitate the application of the knowledge developed from the course in their own research | Ph.D. students enrolled at the University of Uppsala | (49) |
University of Gothenburg | A description of the Centre for Person-centered care | The overarching objective is to support and carry out high quality research relating to person-centered care | On the webpage, they give some tips on how, when, and why patients and the public can be involved in research | Fellows, students and healthcare professionals | (50) |
University of Gothenburg, Linné University and Högskolan Kristianstad, Lund University | A description of a research program | Within the UserAge programme (2017–2022), researchers study user participation to increase our understanding of the opportunities and challenges presented by the participation of knowledge users in research on ageing and health | The UserAge research program aims to increase understanding of how users can contribute at various stages in the research process | Researchers, politicians, business, public sector, interest organizations and private individuals | (51) |
Patient organizations and funding bodies Forte, research council | Report | A short report about user participation –Research with and about user participation and the meaning of inclusive research Forte is a research council that finances and initiates research to support people's health, working life and welfare | It is complex and complicated to evaluate the effects of user participation in research (Barber et al., 2011) and consequently such studies are unusual. To that extent evaluation efforts are reported, they are usually based on "anecdotal evidence" (Fudge, Wolfe & McKevitt, 2007). In a recently published literature review limited to user participation in health and social services, with adults as the target group, a larger number of articles is where the effects of research with user participation were reported in different ways (Brett et al., 2014) | Researchers | (52) |
Svenska Läkaresällskapets | Webpage | The need for user participation must be considered and discussed and, where appropriate, described in SLS project applications | NA | Researchers and service users | (53) |
Finland | |||||
Ministeries Ministry of Education, Science and Culture | Webpage | Encouraging researchers to seek bold, new research initiatives that can solve health issues related to major public health diseases | Many agencies funding health research request researchers to consider patient and customer perspectives already when planning their research | Researchers | (54) |
Iceland | |||||
Universities University of Iceland | Webpage | The University of Iceland advertises new grants to support academic staff in public outreach and active participation in society based on their research and specialist knowledge | NA | Academic staff | (55) |
Patient organizations and funding bodies The Icelandic Cancer Society | Webpage | Overall description /homepage | NA | NA | (56) |