About the Patient-Generated Hypotheses Journal

Cite as: Patient-Led Research Collaborative. (2024). About the Patient Generated Hypotheses Journal. Patient-Generated Hypotheses Journal for Long COVID & Associated Conditions, Vol. 2, pp. 1-3

Welcome to the Patient-Led Research Collaborative’s Patient-Generated Hypotheses Journal. The Journal compiles hypotheses to hasten the discovery of mechanisms and treatments for Long COVID and infection-associated chronic conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). People with Long COVID and associated conditions and caregivers of people with these conditions develop, write, select, and edit this Journal. 

Historically, biomedical research prioritizes hypotheses developed by researchers without lived experience of the conditions they study. People with lived experience who have hypotheses about the mechanisms of their respective conditions generally do not have a platform to share their theories to direct future research outside of patient communities. The Journal aims to connect patients’ hypotheses directly with the research and scientific communities. 

Centering Patient Expertise

At Patient-Led Research Collaborative (PLRC), we have put patients in the driver’s seat of research since April 2020. We center patients in sourcing hypotheses for Long COVID and associated conditions in the development of our own surveys,1 in choosing what research to fund,2 and in setting a new baseline for meaningful patient engagement.3 Patients are the foremost experts on their own bodies, and often their research focuses on areas that the medical community has yet to adequately explore.

The Journal authors are patients and caregivers with diverse professional and academic backgrounds, ranging from PhDs to self-taught. The Journal highlights the immense talent pool of our patient network – from their backgrounds, their lived experience of being a patient or caregiver, and from their ability to synthesize existing research – and aligns their expertise with their own hypotheses. Additionally, patients and caregivers communicate amongst themselves, online and offline, to study their health, symptoms, lab results, medication reactions, and experiences, which provide a wealth of knowledge and data to build upon. This pattern recognition is invaluable and regularly results in patients identifying discoveries well before the public and medical community.

Structure and Aims of the Journal

Patient-led research is more effective, timely, accessible, and representative than research without input from lived experiences, and helps prioritize topics that are most important to the patient community. With this in mind, PLRC developed the Patient-Generated Hypotheses Journal. We formed a panel of patient-researchers with lived experience of Long COVID, ME/CFS, and other infection-associated chronic conditions.4 Next, we created the process outlined in Figure 1, which includes determining criteria and format of hypotheses; crowdsourcing submissions; selecting based on strength of evidence; reviewing and editing chosen hypotheses; assembling chosen hypotheses into this publication; and submitting to an open science journal. 

A flowchart of the Patient-Generated Hypotheses process:

1. PLRC team to determine criteria and format of hypotheses
2. Crowdsource submissions from patient and research community
3. Two rounds of selection by PLRC and 16 patient panelists based on strength of evidence
4. External reviewers invited to comment. Feedback shared with authors
5. Accepted submissions: hypotheses, case studies, polls
6. Editorial team works alongside author to edit and refine hypotheses
7. Assembled into a PDF issue to be self-published on website
8. Submission to open science journal

Figure 1. Patient-Generated Hypotheses Process

Each article includes an easy-to-read abstract and an in-depth hypothesis with supporting evidence. All highlight unanswered questions and areas for further research, and some provide instructions on how to test the hypotheses.

The purpose of this Journal is to inspire biomedical researchers to use these hypotheses in their research, to partner with the authors and other patients/caregivers in testing hypotheses, and to uplift patient-generated hypotheses as credible sources of research generation. 

By giving patient communities a platform and voice in the research process, we anticipate faster discoveries and better outcomes for people with chronic illnesses.

Journal Issues

Our first issue contained six hypotheses authored by patients and caregivers on topics including low-dose doxycycline, astrocyte dysregulation, and poll results. Our second issue features four hypotheses involving carbonic anhydrase activity, elevations of Streptococcaceae, chronic inflammation, and BCG vaccination.

1 McCorkell, L., Assaf, G. S., Davis, H. M., Wei, H., & Akrami, A. (2021). Patient-Led Research Collaborative: Embedding patients in the Long COVID narrative. Pain Reports, 6(1), e913. https://doi.org/10.1097/pr9.0000000000000913

2 Patient-Led Research Collaborative. (2022). Patient-Led Research Fund. https://patientresearchcovid19.com/projects/patient-led-research-fund/ 

3 Council of Medical Specialty Societies. (2023, February 15). The Promise of Patient-Led Research Integration into Clinical Registries and Research – CMSS. CMSS. https://cmss.org/patient-led-research-integration/ 4 Patient-Led Research Collaborative. (2022). Patient-Generated Research Hypotheses. https://patientresearchcovid19.com/projects/patient-generated-research-hypotheses/

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