Responsible Neuro-Technologies of Pain (REGAIN)

Marie Curie Postdoctoral Fellowship, 2021-2024. Funded by Horizon 2020 (Grant Nr. 101031798)

Supervision: Prof. Sabine Maasen (University of Hamburg) and Stephen Hilgartner (Cornell University)

Chronic pain is a global health challenge of enormous proportions. Estimates claim that over 1.5 billion people live with chronic pain worldwide, which results in $245 billion in global economic costs annually. Adaptive, data-driven neuro-technologies are emerging as a new technique to support people living with chronic pain. Especially in the United States, neuro-technology has garnered interest by regulators, providers, and patients as a low-risk alternative to pain treatment with addictive opioids. While the clinical evidence for these devices has been well established in recent years, there is a lack of understanding concerning the lived experience of people using such devices. REGAIN studies the impact of neuro-technologies on the daily lives of patients in the U.S. It focuses especially on how patients’ expectations, sense of identity and agency, as well as their relationship with providers changes due to adaptive neuro-technology. These insights will help stakeholders develop new strategies to design, study, and govern neuro-technologies in a responsible way both in the U.S. and Europe.

The study follows a qualitative methodology combining two methods: expert interviews and diary studies with patients.

(a) Expert interviews

We conduct interviews with a range of experts such as clinicians, researchers, patient advocates, policymakers, and company officials. We are interested in how the field has evolved in the past, what sort of challenges it encounters, and how it will likely develop in the future. Questions pertain to the research, commercialization, and governance of neuro-technologies in the United States. The goal of REGAIN is to collect and map different perspectives on such technologies, and seek ways to identify requirements for the responsible research, design, and governance of neuro-technology in the domain of pain management.

(b) Diary studies with patients

We also conduct so-called diary studies with up to 30 patients for up to 1 month. We employ this method to investigate how patient experience with adaptive neuro-technoogy evolves over time. Patients are sent daily prompts with questions pertaining to their everyday pain experience and the interaction with their device. In addition, we plan to interview participants once at the beginning and once at the end of the one-month-period jointly reflecting on issues that were reported during the diary study. This combination of methods allows us to develop a deeper understanding of how patients live with neuro-technology and how they perceive its impact. In particular, it focuses on how such devices shape patients’ view on chronic pain as well as their quality of life.

The study has been approved by the Cornell Institutional Review Board (IRB0143918 & IRB0010761).