Whether you are a professional recruiting firm or part of a research team with a medical focus, running afoul of the Health Insurance Portability and Accountability Act (HIPAA) can result in serious penalties.
As such, recruiting research subjects within a specific medical demographic can be quite tough. After all, walking up to a clinician and asking for a roster of all their patients with X condition can be a quick way to get escorted out of the building.
Luckily, lawmakers have anticipated such roadblocks and have made accommodations so that useful medical-related research can continue. Here are some of the avenues your team can pursue to recruit medical research subjects without violating HIPAA:
A written authorization from a willing participant can be just the ticket your team needs to recruit someone. The only problem is the obvious paradox: how can you recruit someone that you do not have access to contact?
Your solution lies in reaching out to clinical staff and community leaders to earn their support on your study. They can canvass their patients to find those willing to participate. Any of their patients that sign an authorization form can then be candidates for your study. Best of all, the patient can be informed on the study by a trusted advisor before you, a total stranger, approach them later on.
The only problem with this method is that your community ally will have to make screening judgments of their own, which will inevitably lead to you later screening out those with ineligible characteristics. Expect a lower retention rate as a result.
An Institutional Review Board, as you are likely familiar, is an ethics committee that evaluates your research study design to grant approval with a waiver of authorization. At that point, members of their staff can disclose likely candidates for your study.
For research teams not directly connected with an academic or medical institution, finding an IRB that feels your study falls under their jurisdiction will be difficult, if not impossible. Look for partial sponsorship from such an institution as a possible way to get them onboard.
The simplest and most direct method is to simply say that your study is not fully fleshed out yet. Being in the “preparatory research” phase grants you access to review personal health information and look for potential research participants.
Caveats to this approach include that you cannot remove the information or directly use it in your research without direct subject or IRB approval. Even still, this initial review allows you more direct insight into the possible sample size of your study and how feasible finding research participants will be. You can also pursue the other two options immediately afterward.
Find out more information about HIPAA compliance during medical studies by consulting their clinical research page. You can also learn about how to structure surveys effectively by reading our guide to survey design best practices.