User Roles and Governance

One of the areas of discussion at the NIH Citizen Science Engagement Think Tank meeting last month was how to categorize the roles (and thus rules of engagement) for citizen scientists. There was a continuous pressure to call individuals who “donate” their medical data to scientific research patients. Let me start by saying that I find that unacceptable — aside from the fact that every human being on Earth has been or will be a patient at some point in their lives; the label patient implies a lower level on the hierarchy than doctor or scientist.

The whole point of citizen science initiative is to break down the barriers to entry — we are ALL scientists! Being a scientist is not measured by the number of years in school or diplomas on the wall. It is the willingness to do science that is key. Thus we can all be scientists. With that said, what follows is the discussion on group dynamics — how do people work in groups and how we can support productive scientific endeavors through good design and social engineering.

Think Different Collective

Groups of people are not made up of homogeneous people — we are all idiosyncratically individual. And in science in particular, we want to celebrate those differences. These differences are not only important in the genetic data collection, but in the differences of thought. Think Different! — this is the call of inventors and problem solvers. So while we would need to teach the scientific method, we want to support the freedom of thought. We want to encourage novel technology development and quirky experiments, because this is the strength of thousands of citizen scientists.

Different people have different motives for participation in a group activity. Some do it because it is the IN thing to do or because they want to be a member of a community. Some have more personal inspiration — close friends and/or family members that suffer from conditions that could only find treatment through crowd-sourcing the data, technology, funding, or experimentation and treatment development. But different motives don’t change the fact that all these individuals are engaged in doing science. Collecting data (genotype and phenotype, for example) is as much part of doing science as running bio lab experiment. Science done on the cheap is no less “scientific” than science requiring millions of dollars of investment. We are looking for good science, and that can be done by anyone.

So once we have established that everyone is potentially an equal contributor when it comes to citizen science, we can move on to a more complicated topic of roles and governance in social groups.

The Differences in Roles and Group Dynamics In Large and Small Teams

We are social animals and we a lot of intuitive understanding of social dynamics, especially in small groups. That’s because we have a lot of first-hand experience with small groups. Starting with the nuclear family, followed by circles of friends, classmates and yard-mates, sports and activity teams, youth orchestras, and, moving forward, work teams and work place dynamics. Each of these groups have a specific set of social rules of behavior that is learned through repeated exposure and indoctrination; and each have differences attributable to size of membership and duration of exposure (and familiarity). And finally, some differences are driven from goal alignment — sometimes goals for a group are clearly articulated and shared by all members; and sometimes there are hidden agendas and loosely identified shared objectives.

In general, there’s a trend for higher and more objectified set of rules that govern behavior in larger groups. Thus countries have legal codes that are not only enforced but taught to the general population as part of their civic education. One of the sources of confusion and disorientation that visitors/tourists feel in a foreign country is this basic lack of understanding of the background set of rules and norms that support the social structure of unfamiliar society. This lack of comprehension leads to numerous misunderstandings and miscommunications that can sometimes lead to serious consequences. The more different the basic set of legal assumptions, the more confusing and frastrating the interaction between the in group and the outsiders. This is one of the reasons that expats tend to gather together and why we have China Towns and Little Italys and Jewish Ghettoes and so on — people like to be surrounded by the familiar, not only food and such, but the familiar social interactions.

If we plot a graph (see below) of Group Size versus Governance, we get an uneven distribution. The larger the group, the more laws and rules and socially acceptable norms. The smaller the group, the less governance it requires. Part of the reason is that in small group, every member knows every other member. Laws that are required by large societies to keep people from being taken advantage of by strangers are not necessary in small peer groups. Apes (and other mammals and birds) have a well-evoloved sense of fairness and cheaters are recognized and punished.

In particular, groups (large and medium-sized) that have a well-defined social stratification with roles and permissions based on hierarchical structures — a member’s place in a hierarchy specifies what they can or can’t do. Large corporation play the hierarchy game to the point of posting the management charts everywhere. Government bureaucracies love this game too, sometimes making accomplishing the goals of the groups almost impossible due rule limitations. The new trend in “flattening” the corporate structures is largely aimed at this disfunction.

Obviously the military revel in the rigid social rules set, as well as large organized religions.

Unfortunately, many universities and school districts employ the hierarchical governance strategy. Again, many times, this leads to direct conflict with the stated goals of these organizations.

Factories and sports teams have well-defined roles for their group members. And the role the individual has defines what they can and can’t so within the group.

As we move lower on the scale of group size, there are some interesting examples of roles and governance. Families have members with a well-defined roles, although overtime these roles change. Small working teams, where all members know each other, allow for more interchangeable roles and more fluid governance. Groups of friends behave similarly, allowing different members to take a lead depending on the situation or activity.

Notice that some parts of the graph are not really populated. There are no obvious groups that are large and live in anarchy — this is just not sustainable for long. The same is true for small but rigid law-binding groups — hard to enforce rules continuously among a few individuals.

2013-06-09 Role vs Governance Diagram for NIH Citizen Engagement Think Tank

Citizen Scientists

Citizen scientists is a potentially a very large group of individuals who might share a passion and curiosity for certain subjects, but who will only have loose ties among themselves. If properly supported, members who are interested in doing or working on particular projects will be allowed to find each other and cooperate on a project. It’s important to note that cooperation and collaboration, while used interchangeably, do not mean the same thing. In a cooperative environment, members share the same goals but work on different aspects of the project to advance them. In a collaborative environment, members don’t only share their goals for the project but work on all aspects of the project together. Most projects are cooperative in nature. [Werby, O. (2007). “Examination of Student Motivation and Group Dynamics in Internet-based Learning Experiences,” AACE ED-MEDIA 2007 World Conference on Educational Multimedia, Hypermedia, & Telecommunications, Vancouver, British Columbia]

So in addition to a repository of medical data, it would be great is NIH could create a community-building platform like LinkedIn. In this Citizen Science Collective:

  • anyone can join and set (and change) permissions on their personal data;
  • members can have a “public” profile that is searchable;
  • individuals can join groups based on interest and which support closer cooperations;
  • members can form close ties by “linking” to each other and forming personal (overlapping) communities;
  • members can communicate with each other;
  • individuals can post and share ideas, articles, and research;
  • members and groups can create easy-to-participate-in polls or calls to action;
  • group leaders can distribute information;
  • members can get notifications of events, products, and just get a digest of their groups’ activities;
  • all citizen scientists can freely join any part of the program or participate in any capacity; the notion of being labeled as “patient” would become irrelevant;
  • any member of this vast community can initiate a project, start a discussion, share information, or work of raising funds for experiments;
  • members are given opportunities to learn;
  • leaders’ batons can be freely passed as necessity arose…

Such a community would require time and money and a lot of support — this would be a large undertaking. But there might be significant rewards as well. Trust is not something that is given fast. When we ask individuals to give up their personal data, we are asking for a lot. Creating a community of citizen science practitioners might be a way of establishing trust (over time) and developing a foundation for scientific exploration for years to come.

End Notes

This is my 6th and last post on the NIH Citizen Science Engagement Think Tank meeting in Washington D.C. last month. For those interested in a larger version of the diagram(s), please contact me directly. Below is a list of all the posts I’ve written for the meeting:

  1. 2013 Think Tank Presentation on Socio-Technical System Design
  2. Long-term Strategy versus Fast Success
  3. Intended and Unintended Consequences of Social Design
  4. Build It and They Will Come…NOT!
  5. The WHY Question