Redefining Citizen Science: the Pain Studies Lab & the Arthritis Research Centre ‘In the Wild’

By | Study, Research, Collaborations

An innovative Citizen Science workshop led to a study ‘in the wild,’  an academic-industry initiative, and a province-wide initiative about ‘the burden of pain symptoms’ — a first.

Academic researchers—from the Arthritis Research Centre of Canada (ARC) and Simon Fraser University’s (SFU’s) Pain Studies Lab and BioV Lab—partnered with award-winning industry partner Tactica Interactive to develop a web portal for all citizens of British Columbia (BC). In November 2019, SFU researchers then subjected it to testing ‘in the wild’ of a result of a collaborative effort between ARC and SFU’s Pain Studies and BioV Labs that started with an innovative ‘design thinking’ workshop last April.

Objective: In the web portal, the research teams will ask all citizens of BC about how ‘the burden of pain symptoms’ might affect their lives, from their ability to sleep and function at work and in ‘ordinary, everyday life,’ to their quality of life.

(Photos courtesy: D.Gromala, 2019)

Bhairavi Warke and Ankit Gupta, PhD students and researchers from the Pain Studies & BioV Labs at the School of Interactive Arts & Technology (SIAT) at SFU led the mall study. Researchers: Sherry Wang, Gary Li, Pegah Kaiei, Celia Zhang, Dr. Diane Gromala & Dr. Chris Shaw.

After months of working closely with Tactica Interactive on designing the web portal, the research teams did what tech professionals are taught to do: to test it with some of the people it was designed for — citizens. Such testing is an ideal. However, in industry, ‘user testing’ can be difficult because of its cost or time it requires, or both.

University researchers usually manage to conduct such studies, but more often than not, they’re conducted in a laboratory because labs offer tightly controlled conditions. Studies done ‘in the wild’ — outside of research labs — aren’t as tightly controlled, but they can reach a larger cross section of future ‘users.’ Because the web portal is meant for all citizens of BC, the researchers insisted on testing the web portal in a mall in Surrey.

Results: The web portal’s usability, acceptability, appropriateness, legibility and readability were tested by people in the mall who were generous enough to spend time using the website and answering researchers’ questions. The results were transcribed, analyzed and communicated to the web portal’s designers and to the research teams.

Stay tuned: The web portal is now scheduled to launch in May 2020.

Pain Studies Lab’s Research at PAINWeek 2019

By | Conferences, Events, Publications

On Sept 2-7, 2019, members of the Pain Studies Lab presented 5 posters at PAINWeek 2019, Las Vegas. PAINWeek is a multidisciplinary conference for frontline clinicians focusing on pain management.

PhD student Bhairavi Warke discusses results of the Pain Studies Lab’s research to a PAINWeek 2019 attendee.

Each poster articulates the results of our scientific and clinical studies. Many of these studies are with our long-time collaborators at the Arthritis Research Centre of Canada (ARC) and the BC Support Unit, and use cutting-edge design know-how and interactive and/or immersive technology newly built for helping patients with chronic conditions. The research studies that each poster describes is affiliated with a Pain Studies Lab project:

As-If 

The aim of this Virtual Reality (VR) platform is to raise empathy of aging people who live with chronic pain. In this VR game, a player “inhabits” a full-size 3D character or “avatar,” a grandmother who is struggling to accomplish everyday tasks. Players must strive to accomplish these tasks “as” this character. As they do so, their physical range of motion is restricted as their arm and wrist joints become red, and they hear the aging grandmother’s inner self-talk.

Players in the VR game As If “inhabit” the avatar of an aging chronic pain patient. From this first-person perspective, they try to perform everyday tasks as if they were that patient. The goal is to motivate empathy for chronic pain patients. After much testing, the initial version evolved into the VR version.

Tong X, Kiaei P, Gromala D, Shaw C. The Design and Evaluation of AS IF for Sharing Chronic Pain Patients’ Experience in VR Settings, PAINWeek Abstract Book 2019. Postgraduate Medicine. 2019 Sep 1; 131(sup1), 21. doi:10.1080/00325481.2019.1655695

LumaPath

This VR game is intended to promote Range of Motion (RoM) exercises for aging chronic pain patients with Rheumatoid Arthritis (RA) or Osteoarthritis (OA). In a pilot study, patients were unaware that the range of motion gameplay in LumaPath conferred about 30% aerobic benefit. The older the patient, the higher the aerobic benefit.

Initially, the designers weren’t sure why aging adults were so enthusiastic about this steampunk-styled VR game until patients remarked that LumaPath’s ship bears a strong resemblance to the Beatles’ Yellow Submarine of their youth.

Tong X, Gromala D, Pam S, Kim D. A Serious Immersive Virtual Reality Game for Promoting Chronic Arthritis Pain Patients’ Physical Activity and Range of Motion, PAINWeek Abstract Book 2019. Postgraduate Medicine. 2019 Sep 1; 131(sup1), 19-20. doi:10.1080/00325481.2019.1655695

Tong X, Machuca F, Feng N, Gromala D, Li L, Aceves-Sepulveda G. Promoting Physical Activity and Movement for Arthritis Patients through a Virtual Reality Game, PAINWeek Abstract Book 2019. Postgraduate Medicine. 2019 Sep1;131(sup1), 120-121. doi:10.1080/00325481.2019.1655695

The Burden of Pain Symptoms

In a collaborative project, researchers from ARC, the BioV Lab and the Pain Studies Lab explored what “Citizen Science” might mean in health domains. Instead of asking people to count birds or measure water levels, the researchers considered engaging ways that citizens of British Columbia in Canada might share their pain symptoms, and how they would ensure that such data was anonymized and kept private and secure. Next, they partnered with Tactica Interactive to design and build a public health data-hub. The protoype web portal was tested “in the wild,” and is scheduled to launch in spring 2020.

Bhairavi Warke discusses an innovative new ‘citizen science’ project with an attendee at PAINWeek 2019 in Las Vegas.

Warke B, Li R, Gromala D, Li L, Shaw C, Gupta A, Hoens A, Koehn C, Currie L, Mamdani H, Cooper D, Loo S. The Burden of Pain Symptoms: A prototype for citizens of British Columbia, PAINWeek Abstract Book 2019. Postgraduate Medicine. 2019 Sep 1; 131(sup1): 10–11.  doi:10.1080/00325481.2019.1655695

The Virtual Meditative Walk

This immersive VR system incorporates bio-sensors and its Vocal Coach teaches chronic pain patients to learn Mindfulness-based Stress Reduction (MBSR), a well-validated method that has long been used to help chronic pain patients manage their long-term pain. The benefit of this VR system is the biosensors provide real-time feedback so patients know if their efforts are indeed having observable effects on their mind and body. Pain Studies Lab researchers are now looking at its potential long-term neurological benefits.

In the Virtual Meditative Walk, as patients reduce their stress levels by focusing on their inner states — like their heartrate and breathing — they see and hear changes in the “weather”: fog and clouds gradually disappear, and birds and insects become more active in the virtual forest.

Li R, Warke B, Gromala D, Garrett B, Taverner T. Does Immersive Virtual Reality Modulate Chronic Pain: A Longitudinal Study Design, PAINWeek Abstract Book 2019. Postgraduate Medicine. 2019 Sep 1; 131(sup1), 20–21.  doi:10.1080/00325481.2019.1655695

FitViz

In collaboration with ARC, researchers from SFU’s BioV Lab created and clinically tested FitViz, an app that uses a FitbitTM to help patients with Rheumatoid Arthritis (RA) and Osteoarthritis (OA) and physiotherapists to track & monitor their physical activity levels.

FitViz also determines and recommends the frequency and exercise level for individual patients, termed “bouts.” In this way, patients can get a sense of how much exercise is best for their specific needs and can monitor their own progress, while their physiotherapists can follow and adjust their recommendations.

Tong X, Heng T, Gupta A, Shaw C, Gromala D, Li L. FitViz-Ad: A Non-Intrusive Reminder to Support and Encourage Rheumatoid Arthritis Patients with Physical Activity, PAINWeek Abstract Book 2019. Postgraduate Medicine. 2019 Sep 1; 131(sup1), 121-122. doi:10.1080/00325481.2019.1655695

The Pain Studies Lab’s researchers also presented results of VR studies that lab member Xin Tong conducted over several months in Beijing:

  • A study among participants in Beijing exploring body ownership, sense of agency and heat pain perception using VR and Leap MotionTM sensors.

Tong X, Diao H, Gromala D, Wei K. Exploration of Body Ownership, Agency and Heat Pain Perception in Virtual Reality (VR), PAINWeek Abstract Book 2019. Postgraduate Medicine. 2019 Sep 1; 131(sup1), 19. doi:10.1080/00325481.2019.1655695

The research results that lab members presented raised interest among the attendees, many of whom are pain clinicians and some researchers from laboratories and pain research institutes across the U.S.

upcoming

The Canadian Pain Society’s (CPS) Annual Scientific Conference 2020 will feature AS IF, and recent research results will also be shown at the International Association for the Study of Pain’s (IASP) upcoming conference this summer in Amsterdam.

At PAINWeek 2019, graduate student Ruoyu (Gary) Li explains our longitudinal VR “dosage” study design for chronic pain patients who used VR in their homes three times per week, at a minimum.

SFU’s Chronic Pain Research Institute named Founding Member of the International VR & Healthcare Association (IVRHA)

By | Collaborations, Lab Updates, Other News

“We know from decades of research that virtual and augmented reality (VR/AR) technologies can address the most difficult problems in healthcare. Ranging from mood disorders such as anxiety and depression to post traumatic stress disorder (PTSD), addiction, autism, cognitive aging, as well as neuro and physical rehabilitation,” said Dr. Walter Greenleaf of the Virtual Human Interaction Lab at Stanford University and the Association’s Founding Advisory Board Chair.

“The Association will play a critical role as the coordinator for the design, development and promulgation of industry standards and best practices for the use of VR/AR technology as part of the next generation of digital medical systems.”

“VR/AR technology will have impact by enabling objective clinical assessments as well as providing for improved skill training and procedure planning. Personal health and wellness can also be improved by using immersive systems to promote better nutrition, engender healthier lifestyles, and to reduce personal stress and anxiety. As the cost of healthcare rises, VR and AR can serve as an effective telemedicine platform to reduce the costs of care delivery and improve clinical efficiency in both urban and rural settings.”

Founding members are from 13 universities and research institutions and from 27 technology companies.
University organizations include:

  • The Centre for Aging + Brain Health Innovation at the University of Toronto
  • Surgical Neuro-Oncology, School of Medicine & Health Sciences, George Washington University
  • The Brain Performance Institute at the University of Texas, Dallas
  • The Arizona Center for Advanced Biomedical Innovation at the University of Arizona
  • The National Mental Health Innovation Center at the University of Colorado
  • The U.S. National Institutes of Health’s (NIH’s) NIAID

Founding members from industry include Dr. Gromala’s collaborator, Frances A. Ayalasomayajula, Head of Population Health Worldwide at HP; as well as hardware companies such as Polhemus and CleanBox Technologies; and health-related software companies, including MyndVR, BehaVR, and Health Scholars, to name a few. European industry members are from the UK (Playing Forward, Sine Wave Company), France (SimforHealth) and Switzeland (MindMaze, Lavendr by Ricolab, Virtual Switzerland).

For a full list of Founding Members and announcement, please visit: the PRWeb website.

Redefining ‘Citizen Science’: Pain Studies Lab with the Arthritis Research Centre

By | Workshops, Collaborations, Events

An innovative workshop redefines what ‘Citizen Science’ can mean in health domains

On April 18th, 2019, Dr. Diane Gromala, Dr. Chris Shaw, Ankit Gupta, Bhairavi Warke and Sherry Wang from SFU’s Pain Studies Lab led a co-creation workshop with their long-time collaborators from the Arthritis Research Center: Dr. Linda Li, Hussein Mamdani and Juliane Chien at University of British Columbia in Vancouver. In this innovative workshop, health researchers and their patient-partners got together to explore new approaches to collecting information about ‘the burden of symptoms’ from patients in British Columbia (BC), Canada.

(Photos courtesy: Bhairavi Warke 2019)

Participants shared their experiences of trying to define and articulate their ‘burden of pain’ symptoms on their biopsychosocial realities, as well as their abilities to function and their quality of life.

The objective: to question what ‘Citizen Science’ might mean in health domains. Instead of asking citizens to count birds or measure water levels, we plan to ask citizens of BC about their pain symptoms — whether or not they have been diagnosed with a particular condition(s). For health research, this may prove to be an innovation since research often follows a diagnosis, and is usually categorized according to a diagnosis or disease.

The workshop was derived from ‘design thinking’ approaches. It structured the way we explored different methods for collecting the pain-related data, including: a standard medical classification list of symptoms, the well-known McGill Pain Questionnaire, information from questionnaires about function and quality of life, ‘Mood Cards’ and lots of post-it notes, tags and writing implements.

In addition to ARC’s patients-partners, the health researchers participating in the workshop played the role of citizens who would be contributing information about their health anonymously. By doing so, we all got a deeper understanding of how rich pain-related data could be, and how complex it is to communicate.

A participant selecting “Mood Cards.”

The workshop comprised four phases:

  1. choosing medically classified symptoms,
  2. annotating a human figure with those symptoms,
  3. describing how their symptoms impacted work, family, life and social contexts, and
  4. choosing “mood cards” to help articulate psychological contexts.

Outcomes of the research revealed a high level of complexity required for such a system and helped identify the needs not only of the citizens who would be contributing their information but also the health researchers who would use that information. The teams plan to further refine their approach and test for security, privacy, usability, compliance, and effectiveness.

Left to Right: Juliane Chien, Alison Hoens, Delia Cooper, Cheryl Koehn, Hussein Mamdani, Ankit Gupta,  Diane Gromala, Chris Shaw, Leanne Currie, Abdul-Fatawu Abdulai, Sherry Wang, Linda Li.

Pain Studies Lab @ Virtual Medicine 2019 — Cedar-Sinai Medical Center

By | Demos, Conferences, Projects

Dr. Diane Gromala was invited to give a talk at Virtual Medicine 2019, a medicine and immersive virtual reality (VR) conference at Cedars-Sinai Medical Center in Los Angeles.

In her talk, “How VR Cures by Enabling Self-Awareness,” Dr. Gromala discussed her approach to developing, testing and deploying VR technology for chronic pain patients. A pioneer in Virtual Reality (VR) for long-term pain, Dr. Gromala’s approach is the result of technological innovation, user-centered design, and scientific evidence-based research she has conducted with thousands of patients since 1991.

Members of the Pain Studies Lab — Dr. Chris Shaw, Bhairavi Warke (Ph.D. student) and Ruoyu Li (M.Sc. student) — also participated in the conference. They demonstrated LumaPath, one of the lab’s scientifically-validated immersive VR systems for reducing chronic pain through exercise. The team both develops the VR technology and designs the ‘content’ of what patients see, hear and interact with.

Currently, the team is investigating the longitudinal effects of VR used at home by chronic pain patients. As VR has been termed a non-pharmacological “analgesic,” the team is also investigating what the best “VR dosage” is — that is, what the best duration in VR is for the ideal analgesic effect.

Dr. Gromala discussing Mental Health Applications of VR at Virtual Medicine 2019 with Dr. Les Posen, Dr. Skip Rizzo, Noah Robinson & Dr. Jessica Stone.

Bhairavi Warke and Ruoyu Li conducting VR demos.

Pain Studies Lab conducts CITIZEN SCIENCE Co-creation Workshop with the Arthritis Research Center of Canada (ARC)

By | Collaborations, Events

The Citizen Science co-creation workshop was led by members of the Pain Studies Lab, the Arthritis Research Center of Canada (ARC) and their patient-partners.

Dr. Diane Gromala, Dr. Chris Shaw, Ankit Gupta, Bhairavi Warke and Sherry Wang from SFU’s Pain Studies Lab led a co-creation workshop with collaborators Dr. Linda Li, Hussein Mamdani and Juliane Chien from the Arthritis Research Center on April 18th, 2019 at the University of British Columbia (UBC), Vancouver. In the workshop, researchers together with their patient-partners explored new approaches to collecting information about the burden of symptoms from patients in the Canadian province of British Columbia.

Left to Right: Juliane Chien, Alison Hoens, Delia Cooper, Cheryl Koehn, Hussein Mamdani, Ankit Gupta, Diane Gromala, Chrish Shaw, Leanne Currie, Abdul-Fatawu Abdulai, Sherry Wang, Linda Li
Photo courtesy: Bhairavi Warke 2019

The main objective behind the Citizen Science workshop was to test different methods for collecting data on symptoms from people who may — or may not — have been diagnosed with a particular condition. The health researchers participating in this workshop were also patients themselves, and played the role of citizens who would be contributing information about their health anonymously.

The outcomes of the research revealed a high level of complexity required for a system and helped identify the needs not only of the citizens who would be contributing their information, but also of health researchers who would use that information. The team’s next step is to further refine their approach and test it for security, privacy, usability, adherence and effectiveness.

Pain Studies Lab’s HQP Weina Jin attended AGE-WELL’s Summer Institute

By | Awards, Events, Other News, Projects

Weina Jin, a Ph.D. student in the Pain Studies Lab, was selected amongst a competitive group of HQPs (highly qualified personnel), as 1 of 18 recipients of AGE-WELL’s 3rd Annual EPIC Summer Institute (http://agewell-nce.ca/training/summerinstitute) in Banff, Alberta from June 18 – 22, 2018. AGE-WELL is a Canada-wide research network and National Centre of Excellence (NCE).

The theme of this year’s AGE-WELL Summer Institute was “Co-Creating Possibilities: Leisure, Recreation, and Wellness – Opportunities for Engaging the Older Adult”. In this one-week project-based learning experience, multidisciplinary teams worked through a design process, from problem definition to brainstorming solutions, developing business models and knowledge mobilization plans, to successfully pitching the projects.

Weina and her team created a project to increase seniors’ engagement in a variety of activities. They designed a mobile app they named “PlayWell.” It recommends engaging activities for newly-retired populations to fight against boredom. During the development of the projects, the team received mentorship from AGE-WELL members about defining a problem definition with stakeholders, designing a business model and developing a market strategy.

Recipients of AGE-WELL’s 3rd Annual EPIC Summer Institute at Banff.

Pain Studies Lab presents AI research at IEEE GEM 2018

By | Conference Papers, Conferences, Papers, Publications

Weina Jin, a Pain Studies Lab Ph.D. student, presented her research on using machine learning to predict cybersickness at the IEEE GEM 2018 conference in Galway, Ireland on August 17, 2019.

In her 20-minute talk, Weina outlined the challenges of building predictive models for cybersickness research. To address these problems, she and her colleagues used a pure data-driven approach. They constructed a dataset for this problem, collected VR gameplay data labeled with a cybersickness core and built machine learning models. In their pilot study, results showed that their machine learning could model cybersickness in real-world VR gameplay settings. The presentation was part of Session 3.4: Deep Learning Techniques for GEM.

Their full peer-reviewed paper will appear in the IEEE GEM’s Conference Proceedings: “Automatic Prediction of Cybersickness for Virtual Reality Games” by Weina Jin, Jianyu Fan, Diane Gromala and Philippe Pasquier.

The IEEE GEM (Game, Entertainment, and Media) 2018 conference is a platform for disseminating innovative research and development work on game, entertainment, and media technologies.

Pain Studies Lab Ph.D. student Xin Tong is collaborating with a prominent pain doctor & motor control expert at Peking U. in Beijing

By | Collaborations, Lab Updates

Xin Tong, one of the lab’s Ph.D. students, is conducting her dissertation research in Peking University’s Motor Control Lab with Dr. Kunlin Wei, one of the top brain and cognition scientists in China.

Xin’s research is mainly about

  1. identifying the major factors in Virtual Reality (VR) that affect pain perception, and
  2. how to use Virtual Reality to help chronic pain patients to better manage their pain.

Her studies focus on the sense of body ownership, the sense of body agency, and the senses of controllability, movement and physical activity in VR, and how they may influence pain perception in both healthy participants as well as pain patients. Eventually, she plans to apply those research findings and scientific results to the lab’s VR.

Currently, Xin is working with pain patients who live with Complex Regional Pain Syndrome (CRPS), as shown in the picture below. This patient has experienced CRPS-related pain for over four years in his feet and hands. Before using the VR environment, the patient he rated his pain level as a 10 — almost always, and almost everywhere in his hands and feet. After engaging with the Pain Studies Lab’s VR title LumaPath for around 20 minutes, the patient rated his pain level to be 8, which lasts for a short period.

Although this result occurred after only one “dose” of VR, the result was significant, particularly because this patient’s pain is unrelenting. Therefore, over the next 8 to 10 weeks, Xin will follow up with a group of pain patients to measure the effects of using VR over time, and to see if those effects persist.

Pain patients with unrelenting Complex Regional Pain Syndrome (CRPS) using Pain Studies Lab’s Lumapath, an immersive VR environment specifically designed for chronic pain patients. Ethics and permission to use these photos were granted.

Pain Studies Lab’s AI Research at CPS 2018

By | Collaborations, Conferences, Projects

Prof. Diane Gromala, Prof. Chris Shaw, and Weina Jin attended the Canadian Pain Society’s 39th Annual Scientific Meeting in Montreal, May 22-25, 2018.

“Automatic Pain Level Classification with Physiological Signals”
Weina Jin, Diane Gromala, Junbo Bao, Yabin Guo, Tianpeio Shen, Oliver Schulte.

Weina Jin presented results from her research study using deep learning to automatically recognize pain levels from physiological signals. This approach may help to better infer pain from patients who cannot express their pain verbally, such as infants, patients under anesthesia, or patients with dementia.

“Towards a Canadian National Pain Strategy: What We Can Learn from the Aussies.”
Dr. Owen Williamson

An esteemed collaborator with the Pain Studies Lab, Dr. Owen Williamson, FRCSC & President of Pain Physicians of BC Society, presented a talk entitled “Towards a Canadian National Pain Strategy: What We Can Learn from the Aussies.”

The Canadian Pain Society’s 39th Annual Scientific Meeting promotes competency-based education and advocates on behalf of patients with acute and chronic pain by bringing together basic scientists and health professionals who are interested in pain research and management.