Donating your medical records to research: What you need to know

To learn more about health, physicians can participate in research, clinical trials, and even contribute their own personal health records for research.

Chiropractic research is an important way you can contribute to the profession. Having good data is part of how treatment strategies are developed that can help other patients–the more you can gather great data and information like this, the better.

Many doctors, however, are unsure how to get started with research and aren’t aware of how they can use their own records and data for research purposes. In this article, we’ll talk about how you can prepare your clinical data, collect the right information in the right way, and find ways to contribute your data to research.

Preparing patient data

Before you use patient data for research, of course, you’ll need to make sure you have permission from your patients. Many clinics have a data use and privacy policy they ask new patients to sign during the onboarding process. This is a perfect opportunity to ask about using data and information for research.

Getting express, written permission is really important. The authorization you have patients sign should meet all of the standards of HIPAA’s Privacy Rule-for instance, it should specify how information will be disclosed and used.

The HIPAA Privacy Rule specifically regulates how covered entities such as chiropractic clinics use protected health information (PHI). This is typically information such as test results, billing information, a patient’s medical chart and history, city of residence, etc. It is protected because access to this type of information can enable someone to determine an individual patient’s identity.

PHI can also be made anonymous and turned into regular health data-doing so requires personally identifiable information. Sometimes information is partially-anonymized, too, so that it exists as a data set along with signed disclosures you’ll have for each patient participant.

In fact, under some circumstances a qualified Institutional Review Board (IRB) may be authorized under HIPAA to determine that disclosure to patients isn’t necessary and that a specific research project may be undertaken without it. This is a specialized situation, though, and shouldn’t be assumed. Before providing PHI to anyone, you’ll need to verify that you’re following the Privacy Rule and that anyone you associate with is doing so, too.

Finding research projects

Many physicians who participate in research find research projects to participate in by networking. Reading about the latest research that interests you can help you identify researchers and projects that might benefit from your data. Look for people working on research involving chiropractic patients or needing chiropractic data. Express an interest in what they’re working on. If you want to help, mention your interest.

For instance, there are ongoing research projects studying the effectiveness of various chiropractic treatments. These studies are impossible without access to data. There are chronic pain studies, there’s research work on what can be done to help more patients who are members of different population groups, etc. Reading about this research is a great way to start getting involved. See what’s been recently published and start looking for work that interests you.

Improve chiropractic care

Your work to benefit research can help more patients and may improve chiropractic as a whole. It’s an important contribution to healthcare–what researchers and doctors in clinical practice do helps chiropractic care benefit even more people than ever. Looking for these research opportunities and helping wherever you can is great for the profession and may even benefit your career. Being involved in research also feels good. You know you’re making a difference.

If you’re ready to make the leap, get started by reading up on the latest chiropractic research and start looking for opportunities to network with your peers and with other doctors. Be helpful and be willing to listen and learn. Figure out what new research you’re passionate about. Ask questions. Before you know it, you might just be working on research of your own.

Sources

NIH, “Clinical Research and the HIPAA Privacy Rule.” U.S. Department of Health and Human Services. https://privacyruleandresearch.nih.gov/clin_research.asp. Published: February 2004. Accessed: September 2018.

Jacob, H. “Why all doctors should be involved in research.” BMJ. https://www.bmj.com/content/352/bmj.i164. Published: February 2016. Accessed: September 2018.