By Vineet Pandey
Postdoctoral Fellow, Computer Science & The Center for Research on Computation and Society (CRCS), Harvard University
Contact: v ineetp13.github.io
Building trust and agreeing on research objectives are critical for community and experts to collaborate. This requires open communication and at least partly shared mental models. However, current “technology first” approach from experts and corporations leaves the community's goals behind. Technology builders and experts have the responsibility to work with communities to understand their objectives and collaboratively identify if their expertise can be beneficial. Such trust-building and knowledge sharing can be mediated and accelerated by trusted organizations that 1) understand experts’ and community objectives, and 2) communicate expectations from both parties to collaboratively shape the project. Here I describe the social processes that happened for one such project to come to fruition.
Our research tool: Hevelius is an online motor impairment assessment tool for patients with neurological conditions. Hevelius has the potential to give experts access to larger quantity and more frequent data to better characterize a neurological condition. The patient community can contribute to improving scientific knowledge about the condition while also potentially answering their own questions.
Social process for collaboration: One member of our research team is a practicing clinician for the rare disease. Apart from possessing research expertise about the condition, his clinical expertise also brings a deeper understanding of patient needs and challenges. Building on this initial trust, it’s important to understand the broader rare disease community’s objectives. We have received immense support in this step from the relevant rare disease foundation. With their experience working with the community and multiple experts, this rare disease foundation provides multiple contributions that are difficult to achieve for a small research group. First, they provide a consistent point of contact to reach out to the community members who already trust them. Second, they have accelerated the research cycle by sharing insights on potential plans based on their prior experience supporting expert-community research. Third, they have actively sought to share resources among multiple experts who could potentially collaborate on similar topics. In short, our collaborator rare disease foundation provides both access to the community and to other experts; developing these relationships ourselves would require substantial effort.
Current research: Hevelius was first used for two years in a movement disorders clinic, primarily with ataxia and parkinsonism patients. In that context, only the motor impairment assessment part of the tool was presented to the patients and the use of the tool was supervised by a trained technician. The data collected by Hevelius were later compared to results of same-day traditional neurological assessments and were shown to be predictive of the diagnosis and disease severity .
Building on Hevelius’ success in the in-clinic deployment, we next collaborated with a particular rare disease community to answer two questions: First, does the tool provide reliable data across multiple uses (including in-clinic visit)? Second, what challenges do people face in using this tool at home over multiple weeks? Furthermore, we also wanted to know whether families’ contextual insights and feedback help experts develop novel ideas. To answer these questions, we are running a 10-week study where people are requested to use the tool at home once a week.
My understanding of CPSR is limited and does not go beyond what’s provided by a quick online search. However, I’ve been concerned by many trends that have become reality: 1) technology corporations running unrestricted A/B experiments without involving participant consent (beyond a long legal document we sign when we create an account); 2) surveillance technology where no common person (including me) understands exactly which data is tracked, stored, and shared with whom, and 3) addiction technology that steals time that people can invest in developing useful skills (offline or online). Adding another layer to these disturbing activities, computing professionals’ involvement in these activities --from conception, design, testing, deployment, and improvements---desperately makes me question whether our field has simply lost track of what’s important?
My interest in understanding the effect of technology and society led me to change research areas from Computer Architecture to Human-Computer Interaction during my first year in graduate school at UC San Diego. Over five years, my dissertation research used the human microbiome as a petri-dish to create scalable techniques for integrating learning and working; it was recognized with 2019 Henry Booker Award for Exemplary Ethical Engineering by UC San Diego.
My research platform Gut Instinct has been used by over 600 people from 30 countries to create novel hypotheses, design experiments, and replicate known results. My research systems have been deployed with the American Gut Project (world's largest crowdfunded citizen science project), Open Humans, and many other communities. I have shared my work with numerous communities including fermenters, makers, patients, and citizen science enthusiasts. In my postdoctoral work, I have continued this line of work by building platforms for clinician-patient collaboration; Hevelius (described above) is one project.
Working in the Design Lab, I learned a multi-pronged human-centered approach to design. However, I could never quite grasp how designers can walk into a situation, understand it by observing, and fix things -- while people living with those realities have struggled to do so. The waving away of deep, concrete systematic challenges by the field of design bothers me. With this community, I want to learn better ways to have experts and people work together.