In the TOPFIT Citizenlab we have been working together with patients for over a year, starting with understanding their view on the monitoring process of rheumatoid arthritis and the usefulness of the HandScan, a new device to measure inflammation (see post here). As I outlined in a previous post, Citizen Science aims to actively involve citizens in the scientific endeavour, so that citizens can also participate in multiple stages of the scientific process (including developing the research question, designing the method, gathering and analysing data, and communicating the results).
Our first case study of the HandScan provided rather limited opportunities to involve citizens in the scientific process. While there are different levels of involvement possible in a citizen science project (from contribution to collaboration to leading a project), we were wondering, what role citizens would like to take (in our case: patients with rheumatoid arthritis). And thinking of “extreme citizen science” which is initiated and/or led by citizens, we wondered: what would be the research questions that these patients would like to get an answer to? Finally, as citizen science today are often conducted digitally, we wanted to know what patients think about a citizen science portal or website to connect, communicate and conduct the actual research projects.
This post outlines the activities to answer these questions and is based on a summary written by my colleagues Ria Wolkorte (University of Twente) and Lieke Heesink (University of Twente).
Rheumatoid arthritis is a chronic condition. Although much research is conducted, not everything is known and patients often have questions. For example, questions on what factors contribute to the onset of rheumatoid arthritis, on what the best treatment or management of certain symptoms is, or about the use of medication.
Patients live with the condition on a daily basis. As a result, they have gained a lot of experience. This knowledge is a valuable addition to the knowledge that researchers have about doing research and the knowledge they gain from the scientific literature. Therefore, as researchers in the Citizenlab, we would like to conduct research together with patients – not only to gain from their knowledge but also to understand, what kind of research is most important for them.
To understand patients’ wishes about research collaboration and to explore whether a digital environment is a good way to shape such a collaboration, we asked the opinions of people with rheumatoid arthritis. We first asked their opinions through interviews, and later through a digital survey, during the period from February to April 2021. While interviews and surveys are common research methods that do not necessarily empower citizens to be a partner in research, these initial studies should be seen as a starting point to create the right infrastructure and to identify which research questions are meaningful for these patients.
To get a better understanding of what patients think, we were able to conduct interviews with 10 patients. We talked with them about their ideas on topics related to arthritis that are important to them, relevant research topics, and finally about their opinions regarding a citizen science website. We asked about reasons why they would use such a website, what they would like to be able to do on such a website, and what topics they would like to research in a citizen science project. These interviews helped to get a first impression and to create a survey. The motivation behind the survey was to see whether the aspects identified in the interviews are also reflected in a larger population of patients with rheumatoid arthritis. The interviews with patients were very valuable to prepare the survey, as it helped us to ask the right questions.
Based on the insights from the interviews, a survey was developed to include the perspective of more patients with rheumatoid arthritis. The survey was distributed digitally over a four-week period via websites, social media, patient associations and by the Medisch Spectrum Twente. The questionnaire was fully completed by 265 people with rheumatoid arthritis.
The picture on the left shows more information about the participants. From the 265 people who filled in the survey, 232 identified as female. The average time since the diagnosis with rheumatoid arthritis was 11 years. The severity of symptoms on a scale from 0 to 10 was on average 5.1, while the impact of these symptoms were rated 6.2 on average. Looking at the age of people who filled in our survey, most were in the age between 50 and 59.
Research Topics of Interest
Following from the interviews, we wanted to see whether a larger group of patients were also interested in the research topics that were mentioned in the interviews. In the survey, patients were asked to choose a topic and also were asked to divide 1000 Euro between the different topics, which acted as a prioritization tool. To determine the topic that seemed most important to people, we looked at both the number of times a topic was chosen, and the amount of money spent on a topic.
The topic that patients would most like to see research on was fatigue (61,445 €; 202x), followed by nutrition (45,481 €; 189x), prevention of rheumatoid arthritis (31,072 €; 111x), pain (2,845 euros; 134x), stress (21,159 €; 120x), exercise (17,567 €; 118x), the weather (14,954 €; 105x), sports (9,374 €; 69x), daily schedule/activity level (9,139 €; 66x), sexuality (5,679 €; 40x) and support tools (3,085 €; 31x).
Roles of patients and researchers
Citizen science emphasises the active role that citizens may take. Research consists of various components and the tasks involved can be performed by both patients and researchers. The figure below shows that according to most patients, these tasks should be performed in collaboration, or else researchers should perform certain tasks. Two tasks were chosen by some of the participants to be performed mainly by patients: 1) suggest research topics and 2) help participants with collecting data. However, the majority chose for these tasks the option that this should be done in collaboration.
Citizen science projects can be conducted using a variety of methods with varying duration and effort needed. Patients were most willing to participate in survey research (254 patients; 96%), research of short duration (199 patients; 75%), an interview (148 patients, 56%), or research of long duration with weekly data collection (128 patients; 48%). They were less willing to participate in research for which data from a smartwatch or activity tracker could be shared automatically (74 patients; 28%) or research of long duration with daily data collection (56 patients; 21%).
A Citizen Science Portal
There was great interest in a citizen science portal or website; 233 patients (88%) found it interesting for themselves, and 257 patients (97%) found it potentially interesting for others.
Patients mainly want to use the website to view the results of studies (212 patients; 80%), to participate in research (192 patients; 72%), to exchange advice with others (167 patients, 63%), to suggest topics for research (105 patients; 40%), to start their own research (92 patients; 35%), and to create an overview of personal data (75 patients; 28%). Fifteen patients (6%) indicated that they would not use a citizen science website.
When asked about user needs for the website, the most frequently mentioned needs were that it should be user-friendly and accessible (90x), that the website should be secure and that the anonymity and/or privacy of participants should be guaranteed (57x), that the website should contain simple language and clear explanations (40x), and that the website should contain reliable information (23x).
This short movie summarises our approach for the Citizen Science Portal:
Summary and next steps
This study shows that patients feel that the cooperation between patients and researchers is of added value. Patients proposed that the first research on the future citizen science website focuses on fatigue. People with rheumatoid arthritis that participated in our study are open to the idea of a citizen science website, which supports the research and to which patients and researchers could contribute in various ways.
Following the activities above, we organised several workshops in May and June. People with rheumatoid arthritis collaborated with Citizenlab researchers and students to determined more general functions of a Citizen Science Portal, topics like privacy and data sharing, how it should look like and other requirements it should meet. We are currently determining how we can implement the portal to conduct the first citizen science project, that most likely will look into rheumatoid arthritis and fatigue.
For more information or participation in follow-up studies, please contact us at firstname.lastname@example.org.
Parts of this post originally was shared in a slightly different form on the TOPFIT Citizenlab website and was also shared with the patients that took part in the interviews and survey.