Crowdsourcing to Be the Future for Medical Research
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February is American Heart Month, and we at PCORI are working hard to fund research that provides useful evidence to people with heart disease and those who care for them as they make decisions about their care. Today, we are sharing a post about a joint PCORI and American Heart Association project to crowdsource ideas for new research questions that address difficult challenges related to cardiovascular diseases. This post appeared February 2, 2017, on American Heart Association News.
Crowdsourcing isn’t just a quick way to get things done on the Internet. When used right, it can accelerate medical research and improve global cardiovascular health, according to a new best-practices “playbook” released by the American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI).
“The benefits of crowdsourcing are substantial,” said Rose Marie Robertson, MD, Chief Science Officer of the AHA, who took part in writing the guide. “You can get information from new perspectives and highly innovative ideas that might well not have occurred to you.”
Crowdsourcing Medical Research Priorities: A Guide for Funding Agencies is the work of Precision Medicine Advances using Nationally Crowdsourced Comparative Effectiveness Research (PRANCCER), a joint initiative launched in 2015 by the AHA and PCORI.
“Acknowledging the power of open, multidisciplinary research to drive medical progress, AHA and PCORI turned to the rapidly evolving methodology of crowdsourcing to find out what patients, clinicians, and researchers consider the most urgent priorities in cardiovascular medicine and to shape the direction and design of research targeting those priorities,” according to the guide.
Engaging patients and other healthcare decision makers in identifying research needs and guiding studies is a hallmark of our patient-centered approach to research, and crowdsourcing offers great potential to catalyze such engagement.Joe V. Selby, MD, MPH Executive Director, PCORI
“Engaging patients and other healthcare decision makers in identifying research needs and guiding studies is a hallmark of our patient-centered approach to research, and crowdsourcing offers great potential to catalyze such engagement,” said PCORI Executive Director Joe V. Selby, MD, MPH. “We hope the input we’ve received will help us develop new research funding opportunities that will lead to improved care for people with cardiovascular conditions.”
The playbook offers more than a dozen recommendations on the ins and outs of medical crowdsourcing. It stresses the need to have crystal clear objectives and questions, whether you’re dealing with patients, researchers, or clinicians.
While the playbook spotlights lessons learned by PRANCCER, the guide can also help other medical organizations tap into the collective wisdom of patients and professionals, said Raina Merchant, MD, who wasn’t involved in creating the report.
<p>The American Heart Association and the Patient-Centered Outcomes Research Institute awarded $5,000 prizes to four researchers as part of the crowdsourcing project. While details of their research projects have not yet been released, here’s a quick look at the winners: </p>
<li>Mitchell Elkind, MD, Associate Professor of Neurology and Epidemiology, Stroke Division, Columbia University </li>
<li>Immaculada Hernandez, PhD, Assistant Professor of Outcomes Research, University of Pittsburgh School of Pharmacy </li>
<li>Christoph Nowak, MD, Doctoral student in Molecular Epidemiology, Department of Medical Sciences, Uppsala University, Sweden </li>
<li>Yan Xu, MD, Resident, Internal Medicine, University of Toronto</li>
“It provides structure and process,” said Merchant, director of the University of Pennsylvania’s Social Media and Health Innovation Lab and lead author of a 2013 paper on the benefits of medical crowdsourcing. “As this is still an emerging area, understanding the challenges and the approaches others have used for crowdsourcing architecture is particularly helpful. There’s also an opportunity to make this a ‘living document’ that can be regularly updated as new platforms are created.”
The AHA-PCORI crowdsourcing initiative, made possible through PCORI funding, asked people to name their highest priorities when it came to researching cardiovascular medicine. The first step of the initiative involved getting the insights of patients and family members, and the next took those insights to clinical researchers as well as other doctors, nurses, and healthcare providers.
Getting that “lay perspective” first was imperative, said Robertson.
“The original founders of the American Heart Association had the genius to make it an inclusive organization—not just a group of professionals, but including patients and the lay public. We need to make sure we’re doing research that matters most to people,” she said.
Robertson said one thing PRANCCER’s crowdsourcing reaffirmed was “a gap in the system of guiding patients.”
We need to make sure we’re doing research that matters most to people.Rose Marie Robertson, MD Chief Science Officer, AHA
Patients sometimes struggled to decide on specific treatments not due to a lack of scientific information, but because there didn’t seem to be a way for them to get proper access to the information, she said. But sometimes the issue was that not all the necessary research had been done.
“People want research that tells them and their healthcare provider which of two or three or four different drugs would work best, which is the kind of research that industry won’t usually focus on, for understandable business reasons. But we know comparing things is important, and PCORI has been a real champion of that,” Robertson said.
The key, Robertson said, is to let people open up in a way they normally wouldn’t.
“The crowd often feels pretty frustrated with the preordained questions we ask them in surveys. In crowdsourcing, you ask them to pause and think about the whole process and let them tell you the real story of their problem and what’s most important to them,” she said. “There’s a lot of wisdom in the crowd.… The crowd sees things others may not.”
The views expressed here are not necessarily those of PCORI.
May 6, 2019, 12:32 PM
Comment by PCORI Blog,
May 5, 2019, 11:48 PM
Comment by pasquale fatino,
Hi, I'm a sarcoidosis patient (lungs, liver, heart, peripheral nerves) who can't find much research. I'm wondering if there's a way to anonymously harvest posts from large support groups for raw clinical research data for statistical analysis. It seems like with enough conversations about the same subject, we could derive some valuable information.
I'm a software architect with decades of experience with information systems and an liking to analyzing data. Please let me know if you have any need for a volunteer, lab subject, test patient...
April 12, 2018, 9:14 PM
Comment by PCORI,
Hello. Thank you so much for your comment.
March 15, 2018, 9:43 PM
Comment by Randy Wilson,
While crowdsourcing to get ideas of what or how to research is great, I think there's a whole other level where crowdsourcing could help not only heart disease, but medicine in general: Crowd-sourcing the gathering of medical results. Imagine that millions of people started using a mobile app (or web site) to report on what symptoms they experience; what diagnosis (if any) they received from a doctor (or what self-diagnosis they made); what was prescribed, if anything; what action they took (including medications used); and what ended up happening (whether the symptoms subsided and how quickly). The app could prompt them to quickly ask them what did they do (including home remedies or "rest" or "nothing") and how are they feeling now, etc. The data could be gathered (with proper respect for privacy in place) and aggregated.
There would of course be "noise" in the collected data. But the massive set of data could then be mined to provide very significant results on how to diagnose and treat many conditions.
Currently any study involves huge expense, which leads to either small sample sizes or no study at all in very many cases. People end up suffering from curable diseases because there is no financial incentive to investigate the efficacy of inexpensive treatments. But if we could crowd-source the gathering of symptoms, treatments and outcomes, we would have the data needed to make all kinds of improvements in treatments. At the very least, we would see clear trends that could be followed up by a targeted study to validate the crowd-sourced results.
Many will balk at this idea, just as many did (and some still do) thumb their nose at Wikipedia. But my experience in Neural Networks tells me that the kind of data we could collect via crowdsourcing could revolutionize medicine.
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Hello, Mike. Thank you so much for your comment. We appreciate it.