Citizen engagement in research: Co-creating health

Stakeholder engagement is a growing trend in various fields, including urban planning, software development, and beyond. At its core is the recognition that citizens possess valuable knowledge and experience that can contribute to finding solutions to a variety of problems. While citizens may not have all the answers, their firsthand experiences can be invaluable to researchers.   

One promising approach to harnessing the power of citizen knowledge is through citizen engagement. It involves a partnership or dialogue between citizens and researchers rather than simply being researched. The goal of this approach is to shift power from researchers and institutions to empower people, which has garnered global interest and policy support due to its potential to improve research outcomes.  

Citizen engagement can help researchers better understand their target audience and research interests, guiding the definition of research problems and ideation. Citizens can also contribute to the conceptualization, design, and creation of prototypes. Additionally, citizens can assist with study recruitment and interpretation of results, helping to mitigate researchers' biases and improve the quality and impact of research findings. 

Patients live with health problems and experience the entire spectrum of care, while healthcare professionals have insight into daily wellbeing services. This means they both have unique perspectives on healthcare, making them experts on the lived experience. By enabling patients and healthcare professionals to voice their experiences and take the lead in identifying problems, we can recognize their valuable contributions to establishing solutions. This approach can be a powerful way to develop new products and services with and for them. 

Therefore, this is an invitation to citizens to participate in research as partners or participants. It is also an invitation to every researcher to view citizens as active agents during the production of scientific evidence. By working collaboratively with citizens, researchers can generate high-quality, impactful research with citizen-centred and meaningful findings. 

A quick summary of the potential benefits for the citizens:

• Supports individual empowerment, self-worth, self-confidence, self‐determination, self‐esteem, and self‐care 
• Experience of being valued, meaningful, and listened to 
• Learning from one's own health problems and developing life management skills 
• Learning from research and creating trust towards researchers 
• A sense of community among citizens through engagement 
• Acquiring and sharing knowledge, and promoting health  

 

Authors

Saija Inkeroinen, MHSc, BHSc, PHN, RN

Doctoral researcher, Department of Nursing Science, University of Turku, Finland 

saanin(a)utu.fi

 

Carla V. Leite, MSc, BSc

Doctoral researcher, Digital Media and Interaction Research Centre (DigiMedia) & Department of Communication and Art, University of Aveiro, Portugal 

Visiting Researcher, Department of Nursing Science, University of Turku, Finland 

carla.v.leite(a)gmail.com

 

References

Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35(4), 216–224. https://doi.org/10.1080/01944366908977225

Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient, 7(4), 387–395. https://doi.org/10.1007/s40271-014-0065-0

Commane, B. G., Chen, H. L., Oquosa, O., & Research, P. (2022). Public and Patient involvement and engagement in research design. Co-create a toolkit that enables quality time together across the Dementia journey. Alzheimer's Dementia, 18(S9), e069151. https://doi.org/10.1002/alz.069151

Green, G. (2016). Power to the people: To what extent has public involvement in applied health research achieved this? Research Involvement and Engagement, 2, 28. https://doi.org/10.1186/s40900-016-0042-y

Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A. (2019). Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 22(4), 785–801. https://doi.org/10.1111/hex.12888

Laiti, M. (2021). Yhteiskehittäminen (co-creation) edistää osallistujien aktiivista roolia ja kumppanuutta hoitotyön tutkimuksessa. Terveyttä tieteestä. http://terveyttatieteesta.blogspot.com/2021/06/yhteiskehittaminen-co-creation-edistaa.html. Cited: 11.4.2023.

Ros-Sanchez, T., Lidon-Cerezuela, M. B., Lopez-Benavente, Y., & Abad-Corpa, E. (2023). Promoting empowerment and self-care in older women through participatory action research: Analysis of the process of change. Journal of Advanced Nursing. https://doi.org/10.1111/jan.15573

Baltic Sea Region Network on Personalized Health Care

 

Baltic Sea Region Network on Personalized Health Care was established in 2015 to connect universities in the area to support health through doctoral education (PhD) in health sciences. Baltic Sea Region covers quite a wide area geographically including the countries on the shore of the Baltic Sea as well as the neighbouring countries. The area is home to millions of inhabitants and general health status differs between the countries; thus, health promotion in the area is essential. Doctoral education provides understanding and skills to produce and disseminate evidence-based care individually. Further, doctoral education prepares health care professionals for leadership roles in academic and clinical settings. The career development of health care professionals would be promoted with available PhD education in health sciences.

The Network aims to offer doctoral students in health sciences a systematically constructed, scientifically ambitious, and multidisciplinary research training which benefits from Baltic Sea Region contacts. Another aim is to strengthen the collaboration in Baltic Sea region. Furthermore, the Network contributes to the scientific standard of personalized healthcare research and increases the number of internationally competitive experts in Baltic Sea Region. Personalized health care is an important element in health promotion, treatment, and rehabilitation strategies. Personalized health care emphasizes the individual uniqueness of a person; each patient is approached individually, and the patient participates in the decision-making. Molecular-based personal health information is also connected to the concept of personalized health care.

Baltic Sea Region Network on Personalized Health Care includes 10 universities in nine countries around the Baltic Sea and neighbouring countries. The universities are (alphabetical order based on the country): Southern Denmark University, Odense, Denmark; University of Tartu, Tartu, Estonia; University of Turku, Turku, Finland; University of Lübeck, Lübeck, Germany; Rīga Stradiņš University, Riga, Latvia; Klaipeda University, Klaipeda, Lithuania; Vilnius University, Vilnius, Lithuania; Western Norway University of Applied Sciences, Bergen, Norway; Medical University of Gdansk, Gdansk, Poland; and Karolinska Institute, Stockholm, Sweden. 

The Network is coordinated by the University of Turku, Department of Nursing Science.

A study within the Network universities was conducted in 2018 to investigate the situation and variations in doctoral training in health sciences. The results showed that the opportunities to apply for doctoral education in the field of health sciences differ in the Baltic Sea Region. The existing programs vary in their prerequisites, curricula, and assessment standards. In some countries, PhD programs in the field are under development. The main challenge to establish PhD programs seemed to be limited resources. To support the equality of doctoral education in the area, the Network has organized a yearly cost-free Summer school for all doctoral students in the Network universities since 2016. In 2020, the Summer school was postponed due to the COVID-19 pandemic and the Summer school in 2021 will be organized online for the first time. Further, yearly conferences targeted to doctoral students, have been organized for improving their research reporting skills and supporting future collaboration.

The Network has a lot of potential for collaboration which could improve the quality of doctoral education in the area. The plans made for the future cover sharing expertise in teaching and co-supervising of doctoral students as well as international mobility. Virtual theoretical courses will be a cost-effective way to provide high-quality courses for all doctoral students in the area. Co-supervision of doctoral students will serve as a foundation of stronger research collaboration. Mobility between Network universities for both doctoral students and teachers in PhD programmes will provide possibilities for developing, for example, methodological skills. After established practices in doctoral education, more efforts will be addressed to developing the research collaboration in health sciences in the Baltic Sea region. Some universities within the Network have already shared a research interest and awarded with a grant.

In case of you got interested in the Baltic Sea Region Network in Personalized Care and your university/institution is connected with the Baltic Sea area, please contact Hannakaisa Niela-Vilen, Department of Nursing Science, University of Turku, Finland, email: hmniel(at)utu.fi

On behalf of the Baltic Sea Region Network in Personalized Care:

Anna Axelin, Helena Leino-Kilpi & Hannakaisa Niela-Vilen, University of Turku, Finland

Lisbeth Rosenbek Minet & Dorthe Nielsen, Southern Denmark University, Denmark

Mari Kangasniemi, University of Tartu, Estonia

Katrin Balzer, University of Lübeck, Germany

Kristaps Circenis, Rīga Stradiņš University, Latvia

Alona Rauckiene-Michaelsson, Klaipeda University, Lithuania

Natalja Fatkulina, Vilnius University, Lithuania

Alice Kvåle & Tobba Therkildsen Sudmann, Western Norway University of Applied Sciences, Norway

Kay Sundberg & Susanne Guidetti, Karolinska Institutet, Sweden

PhD mobility and Maintaining my own Wellness: Reflections from a Canadian nurse researcher living in the Netherlands, studying in Finland

I am a Canadian, after studying and practicing nursing for almost a decade on the southwest coast of Canada I decided to begin graduate studies in nursing science abroad. I have been living in Europe for two years, and what I know now I could never have achieved without mobility in studies.

I need to back-up and describe a concept to guide this reflection of my experiences so far with mobility during PhD studies. Aaron Antonovsky, was a sociologist and he developed the concept of a Sense of Coherence (SOC) (Schnyder et al., 2000). The concept helps describe the location someone is on the continuum between ‘ease’ and ‘dis-ease’, and focuses on factors related to maintenance of health and wellbeing. This concept incorporates three attributes; Comprehensibility, Manageability, and Meaningfulness. As graduate students we fit somewhere on this continuum because of institutional, social, physical, and other personal factors. I would like to describe what it means for me to be on this continuum as a PhD student from the perspective of mobility in graduate studies. Using ‘Comprehensibility’ and ‘Meaningfulness’ as guiding concepts I will ask two important questions for a reflection of my experience.

Comprehensibility, do I understand and have confidence in what is happening during my PhD study?

My PhD study’s central focus has been on international collaboration. Therefore, I answer the question by asking specifically, do I understand my international collaborations? At the beginning of my study I did not have a good understanding of all components of my international collaborations. My PhD plan was revolving around a collaboration in a country other than that of my University enrollment (The University of Turku) and although I understood the collaboration from a practical sense I had not asked myself critical questions about the nature of this collaboration. For example, could I have confidence that the contribution I made to this collaboration would benefit my academic and scholarly development. I decided to ask this question a little later than I think I should have, however once I did ask this question I pinpointed a source of my discomfort and feelings of helplessness within this collaboration. As a result I developed a new collaboration plan and I started out by asking if my contribution to this collaboration makes sense for my personal and professional goals. I can now answer yes to this question and I am moving forward in my PhD study with comprehensibility. I feel more confident as a leader and as a novice researcher.

Meaningfulness: Is my goal of completing a PhD worth my efforts and commitment?

Essentially, what comes to mind when I answer this question is; do I have any stakes in the international collaborations. I don’t find it easy to separate meanings in my life and the meaning that I have made in my research work. My research work is something I do because I love developing myself and seeing the world around me develop. Working in Health Science means for me that I get to see an intersectionality between my own capacity for wellness and the discoveries made by research teams for the betterment of wellness for individuals, communities, populations and nations. At various times in my short research career I have felt a spark of personal meaning when working on a research problem with a group of passionate and thoughtful colleagues. I know now that I will be the most committed to a project when I get that spark, and after re-organizing my research plan for my PhD and re-structuring the international collaborations this spark is popping up all over the place.

Tips for others based on this short reflection of my experience:

•  Listen to your feelings of uncertainty in any study experience and after reflection of the uncertainty and your current circumstance take action.
• Listen to those that see you most often and know your circumstances truly, they will give you the right advice even if it is hard to hear, take the advice and reflect on it. (Family, partners, and/or mentors)
• Remember that you have the power to ask and receive answers and support for reaching your personal and professional goals.
• Chase the sparks that motivate you and give you a sense of meaning from your work.

Finally, I recommend international collaboration and mobility in graduate studies. If these elements are added to any study plan there is potential for building confidence and meaning which are elements for arriving at the ‘ease’ end of Aaron Antonovsky’s continuum.

Writer:

Jenny Auxier 

PhD Candidate

University of Turku

Department of Nursing Science

Reference:
Schnyder, U., Büchi, S., Sensky, T., & Klaghofer, R. (2000). Antonovsky’s Sense of Coherence: Trait or State? Psychotherapy and Psychosomatics, 69(6), 296–302. https://doi.org/10.1159/000012411