Patient involvement is the active and collaborative interaction between researchers and patients across various stages of the research process. Patients make valuable contributions to many types and phases of research. Studies show that involving patients can improve research in multiple ways:
- More relevant research
- Better understanding of what patients find acceptable
- Better informed consent process
- Improved experience among study participants during the study
- More and better communication about the results of research
Please contact the Research Grant Support for additional infosheets on patient involvement in research (projects).
Patient involvement emphasizes patients taking an active role in managing their health, making informed decisions about their care, and participating in activities that promote wellness and prevention. This can include activities such as shared decision-making with healthcare providers, adherence to treatment plans, and utilizing health information technologies for self-monitoring.
It is a specific aspect of citizen involvement, also known as Citizen Science, which involves the public actively participating in scientific research across various fields. The aim of citizen involvement is to develop better, more innovative and more relevant outcomes, and to increase societal trust in the processes and outcomes of research and innovation. Citizens are important stakeholders that can be involved both during the project design (open science practices) and during the communication of project results (outreach activities).
With increasing recognition and participation globally, including funding agencies, citizen science is emerging as a distinct discipline, underscoring the vital role of society in advancing scientific knowledge. As such, it is recommended that researchers involve citizens and/or citizen-led organizations in their projects. This can be done at various levels of involvement, from minimal to intensive, illustrating diverse engagement opportunities within citizen science initiatives.
Levels of Patient Involvement
Several models and frameworks have been developed to categorize the extent of patient involvement. The most commonly cited one categorizes patient involvement into three levels based on the extent of participation: involvement, participation and engagement.
Patient Involvement represents the deepest level of patient integration into the healthcare process. At this level, patients are active partners and collaborators, working alongside healthcare providers and researchers throughout the entire journey. They have a voice and shared decision-making power in co-designing treatment plans, healthcare policies, research studies, and overall care delivery. Patients are involved from the initial stages of conceptualizing research questions or care approaches, all the way through to the implementation and dissemination of findings. This type of engagement is preferred as it has the greatest potential for societal impact.
A step below is Patient Participation. Here, patients take part in research studies or trials as participants, actively contributing data that informs the research findings. They provide formal consent and their experiences, symptoms, and outcomes are systematically collected and analyzed by the researchers. However, patients may not necessarily have input into how the study is designed or conducted beyond being subjects of data collection.
At the lowest level is Patient Engagement. This primarily involves healthcare providers sharing information, knowledge, and research findings with patients in a one-way manner. It could include public education events, awareness campaigns, or providers informing patients about their conditions and treatment options. Patients are engaged by receiving information, but there is limited opportunity for them to provide input, collaborate, or share in decision-making at this level.
How to involve patients in your research
For any health-related project that might have an impact on patients, it might be important to involve patients or patient organizations in your project. Involved patients are actively thinking along with the researchers about the study design, organization, execution and dissemination of the results. Involving patients across various stages of the research process can improve research in multiple ways.
A grant application can be strengthened with well-founded, well-documented patient involvement in the study. This can enhance your chances of success in national and European calls. Feedback from the patient perspective can lead to new viewpoints for the study design and execution, as well as for the evaluation of results.
Citizen & Patient Involvement in EU projects
In Europe, universities, research centers, and museums play significant roles in propelling citizen science initiatives. Its primary representation, is through the European Citizen Science Association (ECSA), a non-profit organization established to foster the expansion of citizen science across the continent.
Although there is no clear EU-wide policy on citizen science, the European Commission highly recommends to involve all relevant knowledge actors (including citizens) in research projects. Citizen engagement is an Horizon Europe programme principle and operational objective that refers. As such, these practices are evaluated under Excellence and Implementation (open science practices) and in Impact (outreach activities) of Horizon Europe Proposals. Therefore, it is recommended that researchers involve citizens and/or citizen-led organizations in early stages of their projects.
Please contact the Research Grant Support for an additional infosheet for strategies to involve citizens in an EU project.
Citizen & Patient Involvement in national projects
In the Netherlands, Dutch citizens actively participate in a diverse array of citizen science endeavors, including projects such as air quality monitoring, noise monitoring, and studying earthquakes induced by gas extraction. These initiatives often originate from grassroots efforts. While the Dutch term for "citizen science" is "Burgerwetenschap," the English term is also widely adopted.
In the past years, Charity Funds (e.g. KWF, Hartstichting, Hersenstichting, Longfonds) and NWO/ZonMw have actively involved patients in the evaluation of study protocols in applications for research funding, for studies with human subjects. As it turned out, this involvement often leads to valuable feedback for the applicants. In recent years researchers are expected to involve patients in the design and execution of the study. In particular, the Dutch National Research Agenda has presented a compilation of 140 overarching scientific questions, which have emerged from a distinctive bottom-up initiative, spearheaded by the Dutch public and numerous organizations across the Netherlands.
Researchers, also investigators in fundamental, basic research who would like to involve patients (and their family and/or caregivers) in their national research projects can find information on the ‘do’s en dont’s’ in 4 different forms of patient involvement in the brochure of ZonMw/VSBFonds ‘Een 10 voor patiëntenparticipatie’ (2013). ZonMw also offers an e-learning module in regards to Citizen Science. ZonMw encourages participation and Citizen Science, and this participation plays an important role in the assessment of grant applications. More about Patient Participation at ZonMw can be found here.
On the websites of the Dutch Heart foundation (Hartstichting) and the Queen Wilhelmina Fund (KWF) information can be found on their specific activities on the topic of patient involvement.
There are several frameworks and tools available to help researchers think and plan for meaningful patient involvement throughout the research process. Specifically, these tools can help researchers evaluate the quality of engagement, guide the level and methods of involvement, foster partnerships, and improve reporting practices.
Among these models is the “Involvement Matrix” by Kenniscentrum Revalidatiegeneeskunde Utrecht. This matrix is a tool that was developed to help researchers in the involvement of patients in their projects and in research, offering a solid foundation for designing inclusive and participatory approaches. For more detailed information on how to use this matrix, please contact the Research Grant Support for additional infosheets on patient involvement.
National resources
Local and national initiatives to help researchers engage with patients in their research, in the form of toolkits as well as courses.
- Kickstarter patient participation for researchers - Participatiekompas (in Dutch).
- School for Participation (in Dutch). The School for Participation is an initiative of the Participation and Diversity Section of the Ethics, Law and Medical Humanities Department of Amsterdam UMC. The section is a forerunner in the field of participatory action research and participation in research, care and policy.
- Involvement of young experts by experience in research. The Centre of Excellence for Rehabilitation Medicine, a collaboration between University Medical Centre Utrecht and Rehabilitation Centre De Hoogstraat (KCRU) and ZonMw have taken first steps in the realisation of an infrastructure to systematically involve families in all aspects and stages of research, inspired by the PenCRU Family Faculty in Exeter. The document serves as a background resource providing insights, literature study findings, and guidance for those interested in involving youth in research.
- National Program Open Science (NPOS): brings together national stakeholders in the Netherlands with the aim of coordinating the transition to Open Science and to disseminate its importance. In their site there is a lot of information on events at national level.
- The Student Initiative Open Science (SIOS): A student-lead initiative to promote open science within students at the early stages of their careers.
Comprehensive resources
The Patient Engagement Management Suite (PEM Suite), a hub of co-created tools, resources and practices to help stakeholders adopt patient engagement in a systematic, efficient and meaningful way. In particular, their collection of “How to Guidelines”, aims to provide researchers with specific support in their patient engagement efforts, on key activities across the medicine development lifecycle. Perhaps the most relevant for Amsterdam UMC researchers, is the guide “Patient Engagement in Early Discovery and Preclinical Research”, cocreated with EATRIS. This is a must-read for any researcher interested in engaging patients in their research. (Download the guide here).
Patient Engagement Toolbox launched by PARADIGM, an Innovative Medicines Initiative (IMI) Joint Undertaking 2, that received support from Horizon2020. This Patient Engagement toolbox brings together in one place all the project’s recommendations, tools and relevant background information to make patient engagement in medicines development easier for all.
In addition, you might want to check the newly developed Patient engagement Resource Center, which is a repository of selected relevant public resources to help researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement: from planning to conducting and evaluating.
How to Improve Patient Engagement in Medicines Research and Development. This article introduces a practical roadmap for patient involvement (PI) in medicines research and development (R&D), addressing the lack of structure and consistency in existing PI initiatives. It emphasizes the importance of formal documentation of PI activities and offers specific opportunities for PI across the stages of the medicines R&D life cycle, backed by concrete examples. Researchers would find this article valuable as it provides a comprehensive guide to enhance PI implementation, fostering collaboration and systematic approaches in medicines R&D.
The Patient Centered Outcomes Research Institute (PCORI) has developed several resources for researchers to help them engage with patients in their research projects. Specifically, these resources might be extremely useful:
Resources at the European level
For specific guidance on how to involve patient organizations in the Ethical review of Clinical Trials please refer to this publication.
Briefing Paper on Citizen Science by Science Europe. This briefing paper looks in detail at the evolution of citizen science and citizen science policy, provides examples of initiatives from around the world, and considers the future of the activity.
If you are involved in an IHI project, please refer to this document on Guidance for Patient Engagement for Industry-Led Research.
- Briefing notes for researchers | INVOLVE. The briefing notes outline various methods of involving the public in research, offering guidance on planning, resourcing, and supporting public involvement in your research endeavors.
Here you find an overview of internal events and a selection of external events on patient participation in research.
Internal events for Amsterdam UMC researchers
- tba
External events
- May 14 - 15, 2024 (London): Patients as Partners Europe 2024. Unparalleled opportunity to hear from pharma R&D and patient advocacy together on how patient involvement gets done to drive greater efficiencies in clinical research with better outcomes.
- October 22, 2024 (Maastricht University): National Open Science Festival. A yearly event where researchers and students can join to us to learn more about Open Science practices in research and current policy in the Netherlands.
Here you find a selection of external grants regarding citizen science.
Open Science- Infrastructure (Open Science NL) - deadline 5 November
The Open Science Infrastructure call by Open Science NL focuses on developing new or upgrading existing digital infrastructures that support open science practices across all disciplines. It aims to be inclusive of diverse infrastructure needs for enabling open science. The call covers the entire spectrum of open science, from open access publishing to research data management and citizen science. More information about this call here.
Interested researchers can also attend an online Q&A session about this topic on 16 Jul 2024. Registration here. Please note that the number of spaces is limited to 100 and that registrations close on 4 July, 2024, 14.00 CEST (or earlier, if the capacity is reached earlier).
For a repository of trainings and information materials related to Patient Involvement you can refer to the Patient Engagement Synapse.
Other interesting trainings for Amsterdam UMC researchers might be:
Patient engagement training - PEM Suite. An innovative and accredited learning program that will concretely help researchers either start their patient engagement journey or take it to the next level. The modules are divided into short chapters, with interactive content and videos, making everything easier for you. In particular, level 1, is very interesting for researchers, as it is a short 15-minute introduction to patient engagement.
Citizen Science voor gezondheidsonderzoek en zorginnovatie - Overview (zonmw.nl). E-learning course (in Dutch). The e-learning provides an overview of the most important aspects of Citizen Science for proper preparation and start, implementation and completion of a project. The e-learning also shows a number of examples of application within health research and healthcare innovation. The e-learning contains the necessary links and references and is intended for introduction and inspiration.