Why Aren’t We Talking About Citizen Science in Nursing?

In her book The Disordered Cosmos: A Journey into Dark Matter, Spacetime, and Dreams Deferred, Dr. Chanda Prescod-Weinstein says…

“Maybe our understanding of physics will change as our understanding of who can be a physicist changes”.

This idea has lived, rent-free, in my head since I first read it. This idea is powerful because it causes us to face the reality of the role that social phenomenon play in science, another point that Dr. Prescod-Weinstein makes in her book.

In a post talking about nurses and citizen science, you may be wondering why I start by discussing a quote about physics. Well, that simple. Dr. Prescod-Weinstein's words, though focused on physics, translates to so many other disciplines within science and academia, and life. To those who are paying attention, the wider implications of the earlier quote are loud and clear…

“Maybe our understanding of SCIENCE will change as our understanding of who can be a SCIENTIST changes”.

We could easily substitute the word “science” for nursing in that quote. The profession of nursing is in a near-perpetual state of metamorphosis, both in ways that are exhilarating and others that are frustrating. Some changes happen much too slowly, while others come rapidly. Despite the history of nursing having to remake itself, we have yet to master changing gracefully, and you know what…. it be like that sometimes.

More nurses need to pay attention to this

A quick literature search using terms like nursing and citizen science reveals that there doesn’t seem to be much discussion (at least in peer-reviewed literature) about nurses being involved with citizen science.

Nursing, not for the first time, is at a precipice. However, perhaps unlike ever before, our profession is positioned to be able to DISRUPT and REIMAGINE NURSING and how we take up space in society, as individuals, and as a worldwide network of clinicians, scholars, technicians, and humans. For some time, the future of nursing has been expanding beyond the roles we’ve historically been permitted to occupy. More and more, we are seeing a need for nurses to hold roles in the community and outside of traditional care settings like hospitals and clinics. Time and circumstance have validated that we need nurses to show up in new and creative ways to serve their communities as clinicians, innovators, entrepreneurs, and agents of change.

I have said before that I think that, for far too long, we in nursing have been bound and gagged, and we share ownership in fault for this. Our profession has its fair share of being complicit in historical and present atrocities and injustices, both actively and passively. Over and over, we see that what we’ve always done and thought, as a profession, as academics, and as a society, will be absolutely insufficient as we hurtle forward in time. Nursing needs to be liberated to stretch and imagine new ways of being and doing.

Enter, citizen science!

Citizen Science is a form of participatory research that national geographic describes below…

“Citizen science is the practice of public participation and collaboration in scientific research to increase scientific knowledge. Through citizen science, people share and contribute to data monitoring and collection programs.”

It often is conducted in partnership with professional scientists and institutions, but not exclusively. Citizen Science, or #CitSci, is known by other appellations, such as community science, crowd-sourced science/research participation, and public science. Though the term citizen science is the most globally recognizable (thus why I’ve decided to use it in this post), community science is becoming increasingly popular for reasons of inclusivity. Citizen/Community science is for EVERYONE and is NOT dependent on an individual’s or group’s citizenship or immigration status.

Citizen/Community Science makes a real-world impact. It is a “real’ form of doing “real” science. Citizen Science projects can be simple or complex in nature. Citizen Science includes actual research funded and sponsored by various institutions and done in partnership with professional scientists.

Examples of the real-world impact of citizen science:

1. Citizen science has helped identify new worlds (exoplanets) and more in NASA-sponsored projects.
2. The Environmental Protection Agency (EPA) relies on data collected from citizen science.
3. Citizen Scientists, using gaming focused on protein folding, contributed to discovering new and creative ways to design proteins.
4. A Study being completed by researchers at Columbia University allows those living with endometriosis to become citizen scientists and contribute to the research about their lived experiences using the Phendo App.
5. Patients like me is an ongoing medical information sharing effort utilized by healthcare providers and the people they serve to improve patient experiences in healthcare and treatment.

There are countless other ways that citizen science is changing and expanding how research is done, even in the realm of health and biomedical research.

I was first introduced to citizen science five years ago when I looked for ways to support causes I loved but didn’t plan to pursue as a career. As a nurse, I work most intimately with nursing science (yes, nursing is a science, and no, it’s not up for discussion… it's a fact). My education was a curated mix of learning about and applying the social and natural sciences (as well as the arts), such as psychology, sociology, various biological sciences, and chemistry. Even though these things continue to fascinate me, I also love and am curious about marine science, astronomy, and ecology. With Citizen Science, I can participate in research and learn more about these fields that have always captivated me without shifting my career trajectory or having pre-established relationships in those science communities.

Furthermore, citizen science validates that being a part of science doesn’t require certain academic credentials or job titles. Citizen science validates that I (and many others) have been a scientist my entire life, from the first time I asked why and went searching for answers. I realize that my saying this will make some uncomfortable; as I discussed in an earlier post, our society attaches much social currency to the words science and scientist. Thus, the title of scientist is fiercely guarded and policed in many aspects of society, and nursing academia is no exception.

I recently had the privilege of presenting a poster entitled Embracing Citizen Science in Nursing: Imagining New Frontiers in Nursing Science and Practice at the First #CitSciVirtual Conference hosted by the Citizen Science Association (CSA), of which I am a member. In this space, I was able to see the work and effort of professional scientists, with various college and graduate degrees, alongside that of non-professional (Citizen) scientists. In this conference, I caught a glimpse of a future where science belongs to everyone. It is a place where communities, and the individuals in them, are empowered to ask questions, seek answers, and disseminate knowledge in a way that is accessible and serves their needs.

So much science occurs behind closed lab doors and behind university gates, as Public and Citizen Science expert Dr. Caren Cooper once said in a TED talk. It’s time for nurses (and others) to be a part of doing science out loud and in the open. As we forge new possibilities for the future, ones that will require us to work more meaningfully with communities, public and open science will be imperative. Communities want to be informed and involved.

For so long, not only in nursing, we’ve been guilty of what I call “researching AT people”. Technology and social change are demanding that we start making the community EQUAL PARTNERS in both the care and the science that we do. It is time to do less “researching AT people and communities” and more “co-creating researching WITH people and communities”. Citizen science offers flexibility, on the part of researchers and the public, in ways that many may not have considered. It allows more people from all over the world to contribute to science/research. Citizen science-based studies can have varying levels of complexity and design, offering participants the chance to participate at varying levels, from data collection to co-designing studies and establishing research priorities.

Indigenous, Traditional, and Local Knowledge

Citizen science can also act as an opportunity to uplift indigenous, traditional, and local knowledge. These systems of knowledge and methodologies have always been legitimate by those who belong to the communities that own them. Both historical and present western ideologies about knowledge, knowledge development, and the dissemination of knowledge have attempted to diminish these ways of knowing. Citizen science offers the opportunity to affirm and acknowledge the value of the knowledge of indigenous and local knowledge ILK for what it has always been; Science. An important tenet of citizen science, as developed by the Australian Citizen Science Association, is to acknowledge the contributions of citizen scientists in the project.

Why this matters

Of course, citizen science is not the end all be all of research. It is not a methodology that will work for all types of research questions or teams and it presents its own challenges and limitations, just as any other method of doing science. Even though citizen science helps democratize science, it is still disproportionately accessible and utilized by historically excluded groups in many places. However, citizen offers a future where science is within the reach of more people.

There are many unexplored possibilities for nursing to wield citizen science as a powerful mechanism for equity and meaningful change. It could prove to be a critical element in reimagining how we collaborate to meet the needs of communities and how we educate nurses of ALL licensure levels (from LPN to APRN) to do, participate in, understand, and share science and knowledge.

Without a doubt, the idea of democratizing science (including nursing science) is terrifying for some. Because in making science within reach of everyone, we slowly begin to challenge who gets to ask questions and how they are answered. There is undeniable liberty in being able to wonder and ponder, and yet more freedom in being equipped to pursue and interpret truth for oneself. What happens when people are less beholden to academic institutions (often only accessible by the privileged few) to discover the answers to the age-old questions of who, what, when, where, why, how, and if?

Resources to learn more.

1. Citizen Science Association:
2. Sci-Starter: A website that is a one-stop-shop for citizen science projects for you to join.
3. Zooniverse: A platform that connects people to research projects.
4. Citizen Science.gov — USA
5. Australian Citizen Science Association
6. Citizen Science Global
7. The Science of Citizen Science: An OPEN-ACCESS (FREE)Citizen Science Textbook.
8. Citizen Science: How Ordinary People are Changing the Face of Discovery, by Dr. Caren Cooper (Book)
9. The Field Guide to Citizen Science, by the team at SciStarter (Book)
10. PublicLab.org: Environmental justice through community science and open technology
11. Citizen Science Theory and Practice: Peer-reviewed Publication of the Citizen Science Association