As families and individuals dealing with rare disease, we all want research and answers sooner- but we soon learn how slow that process is. But check out the hope below:
9500 patients participated in medical research without coming into a clinic!
- 9500 participants – no travel involved
- Almost continuous evaluation of biological parameters
- Consent to share data obtained in 50 states, by all participants (easy peesee!)
- A detailed look at what a disease does over time with millions and millions of data points
- Open access to the data, so that any researcher anywhere can look at it, analyze, collaborate with others, and ultimately come to a better understanding of not only the disease but the effect of medications on the immediate and not-so-immediate symptoms
Could this really have happened? YES
A collaboration between the University of Rochester, Sage Bionetworks, and Apple with funding help through the Robert Wood Johnson Foundation, has led to this extraordinary study.
Mobile Parkinson’s Observatory for Worldwide, Evidence-based Research known more simply as mPower.
mPower is an iPhone app that can sense tremors, and manual dexterity, speech (which is also affected by Parkinson’s), and evaluate biological functioning pre and post medications.
Over 12,000 people have participated in the study and more than 75% gave permission to share their data- and that is because of the extraordinary ease of this.
If you have ever participated in a clinical trial you know the reams of consent forms.
Consent was obtained through an electronic platform that allows participants decide what and how widely their data may be shared. In an article in Nature Biotechnology, authors John Wilbanks & Stephen H Friend comment:
“.. as researchers, we have an ethical obligation to participants to maximize the scientific value of their data donation. Our engagement with research participants should be as co-equals in the research ecosystem. Meaningful engagement with participants includes soliciting and honoring participant preferences for the distribution of their donation. Our experience suggests that participants who give their time and their sensitive personal information to researchers often assume that their data will be distributed widely to the full research community, not ‘owned’ as an asset to extract value from, solely by the researchers who happened to collect it.”
Participants in this study have been able to opt in to have real-time data about Parkinson’s shared. Researchers from many fields can study this, think about it, and collaborate with one another about what it all means. In almost every scientific field, we see the need for people trained in many areas- biologists must also know chemistry, physicists and astronomers, and energy scientists all must cross fields. Open access to data lets this happen more easily.
