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What If You Could Donate Your Data For Research?

Published on May 27, 2015
Authored by Craig H. Lipset

There are many ways you can help researchers learn more about certain conditions or diseases by sharing your data. Being an active participant in a study that involves medical testing is not the only way scientific data is gathered in research studies and clinical trials. In fact, researchers can find valuable information from medical data such as electronic health records.

Another source of data important to researchers is you, the patient. Some studies may ask patients to track and self-report symptoms over time, or to share other information such as level of activity. Researchers may use patient-reported data to test out an idea or hypothesis, find common links among factors and diseases, or try to identify reasons why some patients respond well to a treatment while others do not.

Willingness to Donate Data

All data donated to research is protected so that the personal privacy of those who participate can be ensured. And as it turns out, many Americans are willing to share their personal health information for health research. As a matter of fact, one study found that 91% of people surveyed indicated they would be willing to give share their medical information for medical research purposes. Additionally, another study found that people are relatively willing to share their health information with hospitals, drug companies, and public health departments if the information was used for disease prevention, research or to help improve quality of care.

Donating Data: Is There an App for That?

Policies in the United States such as Meaningful Use Criteria help ensure that patients will soon have access to their own electronic health records (EHR). Meaningful Use Criteria encourages doctors and hospitals to implement and upgrade EHRs, which will allow wider use among professionals and patients. Additionally, initiatives like the government’s Blue Button Connector are helping to make that data easier for patients to download and share.

Even new tools on mobile devices are making it easier for you to share health data in ways that you see fit. To find an app for your mobile device, enter search terms such as “medical research apps”. For example, Apple® recently announced the launch of its ResearchKit, a software framework that will pull data from applications developed for it, and from the iPhone HealthKit. ResearchKit makes it easy for researchers and developers to create apps for broad data gathering that could speed along important medical discoveries.

Contributing to Science

There are many ways that you can help contribute to research. Of course you may choose to participate in traditional ways, such as by joining a clinical trial for a new therapy that may treat your condition. But you may also want to think about joining observational studies – these studies gather information about what you normally do to manage your disease. The information that you provide allows researchers to gather data about the course of your treatment and your response to therapy over time. In other cases, you may participate in a registry, which is a database into which you or a researcher can log your personal, anonymous information to help drive research.

If you would like to share your medical information, consider joining a research study or a patient registry. Clinical trials and research studies can be found at www.clinicaltrials.gov, and information on registries can be found at http://www.nih.gov/health/clinicaltrials/registries.htm or https://patientregistry.ahrq.gov/

Looking forward, patients need simple tools to help make sharing data easy and protected. Learning about your rights regarding your personal health information is important. Remember that data should always be used according to your wishes, and it’s up to you to decide when to donate and when to not.

Craig Lipset is Head of Clinical Innovation at Pfizer Worldwide Research & Development. He serves on the Board of Directors for the Foundation for Sarcoidosis Research, as well as the MedStar Health Research Institute.

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After reading this article on electronic health data, how likely are you to donate data for research?

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