Research Process & Team

Project Team

  • Gina Assaf, MSc - Project Lead
  • Hannah Wei - Project Lead
  • Padma Priya - Interview Lead, India Partner
  • Sourya Dash - Patient-Researcher, India Partner
  • Teresa Akintonwa - Interviewer, Project Manager
  • Kathleen Banks - Analyst
  • Letícia Soares, PhD - Senior Researcher & Writer

Reviewers

  • Megan Fitzgerald, PhD
  • Tessa Green, PhD
  • Emma-Louise “Emmilie” Aveling, PhD
  • Julia Moore Vogel, PhD
  • Lisa McCorkell, MPP

Research Process

Overview

PLRC conducts participatory, patient-centered research, often partnering with stakeholders in multiple sectors to provide essential patient expertise that advance research, clinical care, and data-driven advocacy for policies that can increase the quality of life of people with Long COVID.

The process for writing this report included desk research and interviews with Long COVID patients, healthcare workers, and public health professionals who interact with patients or research Long COVID. The investigation started in the fall of 2022, with the majority of the interviews conducted between April 2023 and September 2023, and the follow up literature review and report writing in 2024. In this section, we outline the process, describe the methods used, and provide details about who was interviewed.

Desk Research

The planning for this investigation began in the fall of 2022 by consulting reports and existing research on Long COVID in LMIC countries. The team brainstormed directions for this report taking into account its impact and accessibility to patients.

Conversations with Authors of Prior Work

We conducted unstructured interviews over Zoom with four experts who did similar studies in other countries like Kenya, or who had information on Long COVID and healthcare in India. From these sessions, we pulled together recurring themes such as healthcare access and cultural amnesia. We decided to focus on India as a country due to access to our network there.

Partnership Recruitment

In line with PLRC’s work approach and valuing of lived experience, this project was co-led by patient experts in India, who are most knowledgeable about the issues faced by patients and most affected by the outcomes of this work. For this participatory collaborative work, we brought on Long COVID India, a support and advocacy group led by journalist Padma Priya, as well as Sourya Dash, a patient-researcher.

Refine Scope of Investigation

After considering our desk research, listening sessions, and Long COVID India and PLRC’s unique areas of expertise, we decided to focus the project on healthcare access for Long COVID. The team sourced patients to interview from the networks of team members Padma and Sourya. We interviewed patients from a variety of backgrounds focusing on diversity of location, urban vs. rural, age, and gender.

Health Professionals Interviewed

We interviewed ten healthcare professionals in India from various medical backgrounds and health care sectors. In these interviews, we sought to understand experts’ experiences in diagnosing, treating, and managing Long COVID patients, as well as the barriers, challenges, and successes they encountered. We asked about their perceptions of Long COVID, the support they received from government or medical institutions, and the resources they felt were needed to improve care. The semi-structured format allowed experts to freely discuss areas they were most knowledgeable about and found most relevant to Long COVID.

  • Dr. Sarath Menon, Senior Consultant Neurologist & Specialist in Autonomic Neurology & Neuromuscular diseases, Aster Medcity Kochi, Kerala
  • Dr. Rajeev Jayadevan, Senior Consultant Gastroenterologist and former President of Indian Medical Association Cochin
  • Dr. Rakhal Gaitonde, senior epidemiologist
  • Anonymized, a researcher in global health, health policy and bioethics
  • Jasmine Kalha, Researcher, community mental health, M.A (Social Work), M.Phil. (Sociology)
  • Dr. Joyeeta Basu, primary care physician specializing in family medicine, Consultant Physician, Doctors Hub, Gurgaon
  • Dr. Lancelot Pinto, pulmonologist and epidemiologist at Hinduja Hospital in Mumbai
  • Dr Ashwin Rajenesh, Senior Consultant Physician and Chief, Emergency Department, NS Hospital in Kerala state
  • Priyanka Hosangadi, holistic healing medicine practitioner based in Mumbai, India

Patient Interviews

The patient interviews aimed to understand each participant’s entire Long COVID journey, from their initial COVID-19 infection to their condition at the time of the interview. We discussed their quality of life with Long COVID, community reactions, and their comprehension of the illness, as well as what they felt would help them move forward. These semi-structured interviews were conducted primarily by Padma Priya and Souriya Dash on the Long COVID India team, with support from PLRC team members. Most interviews were conducted on Zoom while some interviews were conducted via WhatsApp, mostly in participants’ native language, Hindi. The Hindi interviews were conducted and translated by the Long COVID India team members. When possible, a few patients were re-contacted to update their health status.

Aliases are used in place of real names in this report to protect patient privacy.

  • P1: Female, 39, Gujarat/Ahmedabad urban area, Works in a museum
  • P2: Male, 25-30, Delhi Urban area
  • P3: Female, 55-60, Hyderabad urban area
  • P4: Male, 25-30, Poi Semi-urban
  • P5: Male 40-45, Mangalore, Urban
  • P6: Female, 47, Maharashtra, Rural
  • P7: Male, 45, Mumbai, Slum
  • P8: Female, 46, Gulbarga, Karnataka Rural
  • P9, P10: Couple: Male & Female 57/58, Adilabad, Telangana, Rural

Synthesis

The team conducted several rounds of thematic analysis of the data collected from all the interviews and the desk research. Because the team consists of all Long COVID patients, we contributed our knowledge and lived experiences to interpret some of the findings.

Further Literature Review and Interview Followup

We conducted continuous literature reviews throughout the research process. The purpose of this endeavor was to ensure that we incorporated newly available data pertinent to the context of Long COVID in India. As new evidence emerged, we were able to further contextualize our findings from the interviews. We followed up with several interviewees to better understand their entire experience between the time of our interviews and the report writing.

Investigative Report Writing

To strike a balance between rigour, accessibility and impact, the team decided to publish an investigative report reflecting on the state of Long COVID in India with a strong focus on healthcare access from Long COVID patients’ and healthcare professionals’ perspectives.