Annex 1 - Shared motivations, goals and values in the practice of personal science - A community perspective on self-tracking for empirical knowledge

Some individuals do not limit their self-tracking efforts to passively collecting and observing gathered data about themselves, but rather develop it into forms of self-research and self-experimentation, also called “personal science”. This type of N-of-1 research is relevant to the fields of personal informatics, patient-led research and social studies of science, but as a knowledge generation practice is still poorly understood. To fill this gap, we conducted 22 semi-structured interviews to investigate the intrinsic and extrinsic motivations of individuals engaging in personal science activities, as well as shared goals and values present in self-research communities. Our analysis is based on a conceptual framework that integrates previous approaches in self-research, as well as in connection with citizen science, the scientific ethos and cooperation in peer production. We identify how self-researchers seek to go beyond personal metrics about their health and wellbeing regarding data provided by wearables, are engaged over time by individual involvement in technology and scientific-related activity, and collaborate following similar goals and values when learning and sharing empirical knowledge with peers. In this sense, personal science can be understood as a specific type of citizen science and an example of a more participatory and inclusive scientific culture driven by self-reflection, critical thinking and openness.

Semi-structured interview script and prompts 1) Introduction a) Quick personal intro from interviewers. b) Basic details about our study on personal science (why it is important and what we are exploring). c) Reminder of consent for interview, and the possibility to withdraw from the study at any time. d) Additional information about the interviewer(s), role and background. e) Quick overview of the four areas of questions for the interview, and its semi-structured approach. Codebook for interviews (v4) This version of the codebook covers 5 main motivation, goals and values related categories for the classification of excerpts from 22 semi-structured interviews (to members of the Open Humans community and to other individuals doing self-tracking for self-research). The codebook has been based mainly on previous conceptual frameworks combining previous approaches for the study of motivations in citizen science (Jennett et al., 2016), the inquiry cycle of personal science (Wolf and De Groot, 2020) and collaboration in peer-production (Spaeth and Niederhöfer, 2020), as well as concepts related to scientific values like the Mertonian norms (Merton, 1973). It also reflects for each category the different sub-codes applied for the interpretation and analysis of these categorised fragments, in connection to other studies and literature and their respective frameworks or units of analysis (mainly on personal science, self-tracking, personal informatics and/or citizen science). "Yeah, so basically I have diabetes and just by nature of trying to get control of the disease, I have to do a lot of self-experimentation to figure out, you know, medication doses, influence of different foods, exercise, etc" // "But for me, I know it's a journey. It's a never-ending journey of getting to know yourself and I mentioned the weight thing because it's so prevalent in the sense like it shows, it feels different, and it's also complex"

2) Background questions
As a potential key, transversal motivation for many self-researchers, it is important as an inclusion criteria to add this code when there's an explicit reference to a personal health condition and/or general well-being. It includes ambiguous mentions of possible conditions inherited or known in the participant's family members, as well as references about knowing oneself better, when in relation to life-style.

Motivated by which health conditions or personal life-style?
A. Improve specific health condition / treatment B. Improve lifestyle / general well being

Extrinsic motivations:
The expression of motivation is in a great way determined by the connection with the professional or scientific career of the participant. Also engaging with self-research as an opportunity to develop or contribute to new products for the market. The only "extrinsic" motivations in this case (also as possible self-mention to scientific contributions), refers to being interested also for "meta" research purposes.
Similarly to the rest of categories, it can be identified among other intrinsic motivations in the same participant stories, even the same sentences.

Motivated by what type of extrinsic factors?
A. Acquiring skills / experience for professional career B. Demonstrating work / results in a specific area C. Involvement in a business / product opportunity Related approaches: Lee, 2014;Jin et al., 2020;West and Pateman, 2016.

Contributing to empirical
knowledge: Mentions to specific research topics, results, questions, issues, protocols or advances in a given field (empirically, not necessarily by/for academia).
"I didn't go and do blood sugar tracking just so I could contribute this data for research. But if I have it anyway, I'm happy to contribute. If I knew someone doing research, it's just a little additional effort for me to capture some additional information and I'll make it useful to them. I'm The motivation could be accompanied by a mention to a specific field, discipline or area of knowledge, even critically. Also (or instead) to a personal challenge perception in a given personal research

Oriented to do what (mainly) with that empirical knowledge?
A. Sharing empirical knowledge B. Learning from Also regarding the need (or absence) of these advances, and especially how they contribute to learning, discovery or sharing with others.
happy to do that, too. It gives like the experiment some additional sense of purpose." // "So one of the big benefits of these projects is that you learn a lot of, it's like science, you know in school, you do science projects. The goal of a science project in school is not for you to win a Nobel Prize, making new discoveries. It's a way to kind of engage you and make you learn about things that are already known by discovering for yourself" problem or complex topic to address. Academic scientists or doctors can be also mentioned, critically or not. Special verbs to pay attention to are 'questioning', 'designing', 'observing', 'reasoning' and ''discovering.

Sharing goals and values
with peers: References to perceived overall agreement, similar points of view objectives or interests, aligned judgement etc. with other individuals regarding a given self-tracking activity or research topic, tool or approach.
"Something that's exciting about Open Humans is that you can even amongst enthusiasts and amongst people who are engaged and excited about it, you can share data sets and you can share consistent data sets, it's a medium to communicate studies and exchange data sets" // "I don't really know how research works yet, but especially [P02] and other people in the group, we definitely seem to have a lot in common even in a standard academic place, so excited about that. I think to nerd out is the phrase which is like just be with like-minded people who think about similar problems and a kind of weird way" As an inclusion criteria, it is important to pay attention here to statements using or connected to the first person of the plural ("us", "we", etc). It can imply somehow "socialization" too, even referred to peers or colleagues outside the community, or shared problems among patients. Also, it can refer to a mention of a new gadget or tool and peers as "early adopters". Related approaches: Heyen, 2016;Merton, 1973;West and Pateman, 2016. (*) 'Social interaction' subcoding added in a second round of interpretation assigned on a consensus basi regarding this specific category.