Cite as: Patient-Led Research Collaborative. (2023). About the Patient Generated Hypotheses Journal. Patient-Generated Hypotheses Journal for Long COVID & Associated Conditions, Vol. 1, pp. 1-3
Welcome to the Patient-Led Research Collaborative’s first issue of the Patient-Generated Hypotheses Journal. This issue is a compilation of six hypotheses plus poll results. People with Long COVID and associated conditions and caregivers of people with these conditions developed, wrote, chose, and edited this issue.
Historically, biomedical research has prioritized hypotheses developed by researchers without lived experience of the conditions they study. People with lived experience who have hypotheses about the mechanisms of their conditions did not have a platform to share their hypotheses, except for within patient communities.
Centering patient expertise
At the Patient-Led Research Collaborative (PLRC), we have put patients in the driver’s seat of research since April 2020. We centered patients in sourcing hypotheses for Long COVID in the development of our own surveys1, in choosing what research to fund2, and in setting a new baseline for meaningful patient engagement3. We know that patients are the foremost experts on their own bodies. We also know that many patients are immersed in research in areas that the majority of the medical community has yet to explore.
The authors of this issue are from diverse professional and academic backgrounds, ranging from self-taught to Ph.D. One of the goals of our Patient-Generated Hypotheses Journal is to highlight 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 align it with their own hypotheses. Additionally, patients and caregivers are often communicating with each other online, discussing symptoms, experiences, lab results, and the reactions to various medications they are trying. This pattern recognition is invaluable and regularly results in patients identifying discoveries well before the public and the medical community.
Structure and aims of the journal
We have seen first-hand that patient-led research is more effective, timely, accessible, and representative, in addition to prioritizing topics that are most important to the patient community. With that in mind, PLRC developed the Patient-Generated Hypotheses Journal. First, we created a panel of patient-researchers with lived experience of Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other associated conditions4. Then we created the process outlined in Figure 1. The process includes determining criteria and format of hypotheses, crowdsourcing submissions, selecting based on strength of evidence, reviewing and editing chosen hypotheses, assembling into this publication, and submitting to an open science journal.
Figure 1. Patient-Generated Hypotheses Process
Each hypothesis has an abstract that gives an easy-to-read summary, followed by the in-depth hypothesis with supporting evidence. Most of the entries also provide instructions for how to test the hypothesis, and all highlight unanswered questions.
The hope is for biomedical researchers to use these hypotheses as inspiration for their research, to partner with the author and other patients/caregivers in testing the hypothesis, and to uplift patient-generated hypotheses as a credible source of research generation.
By giving the patient community a platform and voice in the research process, we anticipate new discoveries and better outcomes for people with chronic illnesses.
References
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/