Can we improve research by crowd sourcing peer review?
Since we launched six months ago, Science & Sensibility has become a multidisciplinary hub for analysis of research in maternity care. I’m proud that we have a childbirth educator, a consumer advocate, and two clinicians among our regular contributors. We also regularly have consumers, childbirth educators, doulas, nurses, midwives, doctors, and researchers leave comments. Together, we shape our understanding of research, discover new ways to look at questions, and find out which research pertains to us and which doesn’t. And we do it in ways that none of us could do alone.
In most cases, our work begins when a study is published in a peer-reviewed journal. The journal issue is published, the press releases go out, and then the rest of us get to weigh in. With much at stake in how the evidence will be used (the findings may impact our bodies and our babies, or change the conditions in which we practice, after all), we set to work. Too often, this process reveals flaws, detects biases, or raises other red flags. But the study is peer-reviewed, so it gets to shape policies and practices – especially if the findings align with the dominant obstetric management model – while we get to air our frustrations in blogs and letters to the editor. If you need more proof of the power of a deeply flawed but nevertheless published trial, consider the rise and fall of the Term Breech Trial, and the multi-stakeholder movement for evidence-based breech birth finally taking hold nearly a decade later. (Several bloggers have covered the recent Breech Birth Conference, including Rixa Freeze, PhD, at Stand & Deliver.)
Also consider these thoughts from the editors of two of the most prominent peer reviewed journals:
It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine. – Marcia Angell, MD, in Drug Companies & Doctors: A Story of Corruption
If editors were to examine [the] body of literature [on the peer review process], they would discover that evidence on the upside of peer review is sparse, while evidence on the downside is abundant. We struggle to find convincing evidence of its benefit, but we know that it is slow, expensive, largely a lottery, poor at detecting error, ineffective at diagnosing fraud, biased, and prone to abuse. Sadly we also know — from hundreds of systematic reviews of different subjects and from studies of the methodological and statistical standards of published papers — that most of what appears in peer reviewed journals is scientifically weak. – Richard Smith, MD, former editor of BMJ in In Search of an Optimal Peer Review System
Today marks the launch of a new journal, The Journal of Participatory Medicine. Participatory Medicine itself is based on the fact that all stakeholders, especially engaged, empowered consumers, are valuable assets for improving the quality and efficiency of healthcare. The Journal mirrors this philosophy. They will break most of the rules of ivory tower academic journals by inviting contributions from patients, providing free open access to anyone, asking for comments and feedback, and, perhaps most importantly, allowing anyone (yes, even you) to volunteer to be a peer reviewer.
As I have said before, maternity care advocates have much to contribute to and gain from the Participatory Medicine movement. I encourage my readers to check out the new journal. No, none of it has to do with maternity care specifically (yet), but here are a few gems that may make you realize that, when it comes to the power of being engaged and empowered and the harms of being a passive patient, it doesn’t matter if the context of care is sickness or health. [Note, free registration required to access journal articles.]
Medicine in the US has become extremely proficient at many technically advanced diagnostic and therapeutic methods. However, they are often applied — very competently — to patients who don’t need them at all. Can participatory medicine improve this situation? One way perhaps, is by facilitating actual informed consents (not merely legal rote signings) for therapeutic and diagnostic procedures, including screening tests and procedures. – George Lundberg, MD, in Why Healthcare Professionals Should Practice Participatory Medicine: Perspective of a Long-Time Medical Editor
As our bodies healed from the assaults of cancer treatment, we began to respond to the needs of others, discovering that we had something to offer, a knowledge that was hard won and deeply felt, and that somehow in that sharing we could both help and be helped. We joined groups and formed groups and sometimes organizations, moving beyond isolation to community. – Musa Mayer in A Seat at the Table: A Research Advocate’s Journey
Purchasers, in other words, understand that participatory medicine is not just about helping an individual patient better understand how to manage their own health and make important health care decisions. Participatory medicine is also about creating a broad awareness that a health system that only rewards services, that is not based on evidence, that sanctions an unaccountable professional and managerial elite to dispense and withhold services — is not just, effective, or affordable. – David Lansky, PhD, in Why Purchasers Should Care About Participatory Medicine
Participation means that we as patients, we as providers and we as health care system managers must be willing to acknowledge our interdependence and meet on a level if changing environment. To do otherwise is dangerous and will lead to poor outcomes. We have no choice. – Kate Lorig in What it Will Take to Embrace Participatory Medicine: One Patient’s View