Patient Participant Study Phone Calls

Are these phone calls from Mayo Clinic? My experience is that when Mayo Clinic is interested in inviting me to participate in a study they use my email address. I have never received a phone call like that from Mayo Clinic. I'd be suspicious of a scam if I received a phone call from any place asking for my participation in a research study. I couldn't say how a hacker gets medical information but I wouldn't tell them anything over the phone and would just hang up.

No, these are not from Mayo. They tend to be from study groups in local areas to me. They pay you for the study, BUT, how did they know about me is my question?

They actually name one of my health issues for their study. It's strange. God Bless you Helen

@covidstinks2023, your medical information is protected by HIPAA and cannot be shared by your doctors and medical facilities.

There are many companies out there searching for participants to take part in research, some of them are for market research and can sound like clinical research. There is nothing wrong with market research, but people should be aware of who they are giving their information to. Is this to advance the market place or advanced medical study.

Clinical research studies have to be reviewed by a medical center's an Institutional Review Board (IRB). IRB is group that has been formally designated to review and monitor biomedical research involving human subjects. This group review serves an important role in the protection of the rights and welfare of the research participants. Included in that oversight are clear consent agreements. Read more https://www.fda.gov/about-fda/center-drug-evaluation-and-research-cder/institutional-review-boards-irbs-and-protection-human-subjects-clinical-trials

@covidstinks2023, are the phone calls you're getting random cold calls made to your number? Do they say how they got your number or where they are calling from?

Thank you Colleen. Yes, it sounds like clinical research studies and a couple of my local hospitals have been mentioned when they called asking if I want to take part. It sounds legit, BUT, I'm skeptical as to how they got this info. When I am asked at a doctor's office if I would like to take part in a study, I always tell them "No".

I personally do not reply back to the call as a message is left on my answer machine asking me to call back if I am interested. They are specific about the medical issue by listing it for the study. My question is how do they know that I have that particular medical issue and how did they get my phone number?

Hugs & Blessings....

This does not sound right. I'm pulling @stageivsurvivor into this discussion as he may have additional knowledge.

Clinical researchers or research coordinators cannot contact you without prior consent. Your local hospitals should not access your medical records and contact information for the purpose of clinical trial recruitment.

Typically clinical trial recruitment happens during a doctor consult. Your doctor may mention a trial for which you are eligible or for more general studies, you may be asked to participate through a questionnaire. This is always done with your consent and only you opt in to be contacted. Other options include clinical trial advertising through posters, ads, and social media posts. In each case, it is the patient who initiates the contact and consents to participation.

I recommend contacting the hospitals in question to report the calls and ensure your name is not on the call list. I'm very surprised that this is happening at more than one hospital.

Thanks Colleen. I deleted the number as it was over a week ago. I get these calls a few times a year. They tend to always be about 2 of my particular ailments.

Next time, I will call the hospital that the caller says they are affiliated with.

To whom would I ask to speak with at the hospital?

Thank you very much for your time and this was a lengthy write for you. Blessings & Hugs...

Yes, I would call the hospital directly. This could be market research and it is even possible that the hospital in unaware that their name is being used in this way.

There are several departments that would want to know if this is happening without their knowledge. I would start with the Office of Patient Experience or Patient Relations.
If you are treated at the hospital, call the doctor's office with whom you are affiliated.

Thanks Colleen so much. I will do it. Blessings to you!