would you do this survey?

[GardeniaGirl]

I got a letter from my HMO today asking me to participate in a survey on pain. It is conducted by researchers independent to my HMO. They selected me because I recently filled scripts for pain meds. The researchers can access parts of my med records, but they say that none of my doctors will be informed of my participation, nor will there be any record of my participation in my files.

I will get $20.

Part of me wants to do it because the docs at my HMO are ABSOLUTELY HORRIBLE about dealing with chronic pain patients like myself.

I go to all out-of-network docs because of it.

I'd like to think this would be a way to help others who are stuck with only in-network HMO docs.

I don't like the idea of them reading my records, but they are researchers who are surveying hundreds of people.

Anyway, just wondered if folks here would do it based on that info.

just curious!

GG

[houghchrst]

Did you ask them if your name would be connected to the information that they gather or if it would just be assigned a number or something.

Often that is the way, like patient #412 and then all the info. Especially since they say there will be no record of your participation. I would do it but that of course is all up to you.

[shotspine]

That's sounding kinda weird to me. First, I wiould call my HMO and find out if they sent out that letter. Second, I would want to know HOW they could access your medical records without your Dr. knowing. Where's the "release of information" coming from/going to. Just be sure this is legit and not some scam.

Personally, I would be very leary until alot of questions were answered. If you verify that this is all legal, then....it's your decision. I don't understand what exactly they are looking for and/or are planning to do with the info and how it would help anyone.

Just my humble opinion.

ss

[Mark N]

I would want to know what the purpose of the survey is and realize it would be very difficult for them to keep your doctors from knowing you are pat of the survey. I wouldn't take part unless I had more info on the purpose of the survey.

[GardeniaGirl]

Thanks for the comments. All the paperwork looks totally legitimate. Its on letterhead from my HMO and has tons of different names of researchers, their phone numbers, etc. They are part of a research branch of the HMO - which is a huge multi-state HMO.

They enclosed a letter describing all the reasons they are conducting the study- to better understand how pain affects people and how medication helps them, etc.

They describe all the privacy practices, etc.

We all talk so much on here about the need for better treatment of chronic pain - it seems like something like this is a way to help get that across to doctors.

I truly feel terrible for the people who are in this HMO and cannot go to out of network doctors like I can.....I will probably end up doing it for that reason alone.

[houghchrst]

When I first started looking for a pain management doctor I was told the only ones in my area that accept my insurance only give injections. I would have had to drive an hour away to another city to see someone. THank goodness for word of mouth. I found someone who is in the rehabilitation field and does pain management as well. He is still 30 minutes away but that is better. I don't have the option of going outside my HMO, I could never afford it.

[Bobbi]

I agree with others who stated that something just sounds phishy about the survey.

Was it your HMO, that you don't use for seeing docs, that gave the researchers info. about what pain meds. you had filled?

Anyway: I don't think that I would entrust researchers, who my HMO already released my info. to, to not disclose "findings" to the HMO. With any research, if legit., there has to be some type "accounting" for how the data was obtained, etc. If they ditch all the records used, and people contacted, there is nothing to assure that someone can independently verify the findings.

One of the control variables has already been ??? Well, it seems questionable to me.

$20? Wouldn't be worth it to me.

Just my opinion :).

P.S.: Just wondering how the doctors and/or the HMO won't know which patients participated when the researchers will have access to some records? The HMO knows the names of the researchers, and, therefore, when asking for records won't it raise flags? Or, is the HMO releasing portions of all patients' records? It just doesn't sound right.

[Kathi49]

I definitely agree with Bobbi and other posters. If it were just a general survey, I don't think I would have a problem with it. I have received those before from the docs offices themselves on how well they are doing (not about medications) and NEVER anyone saying they are doing research or allowing researchers to access my files/data. I would think if they are willing to give or send you $20, they would also have to have your name and address. It sounds too fishy to me too. And who knows who those researchers are. As Bobbi implied where is the accountability, quality control, etc.? I also find it odd that they have said NONE of your doctors will be notified of your participation. I would THINK if supposed research was being done, they would WANT to let the docs know about it or involve them since they are key. I don't know...it just sounds like a group of independent people doing their own thing and I wouldn't want to provide them any info. without knowing WHO they are and what it is REALLY to be used for let alone accessing any personal information. Hold up on it GG and ask more questions. I don't think $20 would be worth it either.

[debhun]

I feel like the rest of the ones that has posted. Some thing don't sit right with me here. It brings up a flag for me. And the $20 is a joke. Most researchers pay a lot more. I would be afraid that this would give them a way to get my meds. When it come to my meds only 3-4 people know what I take and when I get them. I wouldn't want any one to know about my meds. To risky to me. I wouldn't do it. But this is JIMO Only

[Tbackpain1]

I would contact the researchers for more information before filling out any survey. And I would want some kind of documentation in writing from the ins co that any information obtained by the survey would not impact your coverage. If you still feel like something is "hinkey", then just put the survey in your circular file ;)

Theresa

[houghchrst]

Every 2 years I participate in a women's study through the University of Michigan. They ask me a billion questions and then do a health screening, blood tests, all kinds of stuff. Then I get the results back of the test and when they get all their results they publish a a paper with their findings and send it to the participants. No names are used, just graphs and percentages. I get a nice crisp twenty dollar bill when I am done with my interview. It shows everything from mental health issues to physical health issues, pregnancy, poverty, all kinds of things.

I don't know I guess I am just not paranoid enough and figure anything to help. The first couple of times they came to the house, now they do it at a lab.

[GardeniaGirl]

I don't think this is as "hinky" as most people on this thread seem to be assuming.

But.....it is too complicated for me to type out all the details about how this survey is being done.

The essence is that

a) Its funded by the NIH, and

b) one of the organizations involved in it is my HMO - one source of potential participants is members of this HMO. The letter states that members who have been enrolled for more than a year and have filled a prescription for a pain medication (think about how many different meds that could be) were then randomly selected to participate in the survey.

Researchers are from a large university, and the research divisions of two large HMO companies.

I am surprised that no one realizes that HMOs have research programs or divisions within their company. One of the ones in this survey is Kaiser in Northern California, for example.

[Bobbi]

Obviously, I can't speak, and wouldn't be so pretentious to attempt doing so, for others, yet this is what I took into consideration when I chose to respond to your post:

I don't like the idea of them reading my records, but they are researchers who are surveying hundreds of people.

Anyway, just wondered if folks here would do it based on that info.

just curious!

With that in mind, I replied :). I merely gave an honest reply. Were our views - based on what info. was shared previously - actually wanted or not? or maybe it was all rhetorical or thinking aloud. I'm confused :o. Maybe the responses would have been different if all the info. about the survey was relayed from the onset.

Naturally, it's your decision whether you participate.


It is conducted by researchers independent to my HMO.

Which leads to or translate to... ?

I am surprised that no one realizes that HMOs have research programs or divisions within their company.


That's stating two totally different things. Many people do realize that HMOs conduct internal "research." Intimating that people don't know it, is underestimating people.

Somehow, I think you knew the answer before the "question" was asked :).

[markm]

Hi GG,

Thankfully, there's no HMO's where I come from, which is just as well as I think they are they are the devil, and I wouldn't trust them as far as I could drop kick them.

Having said that, assuming you don't have to give any personal details whatsoever, then I'd do the survey and take the cash. But if there's some way the HMO could know who you are, then don't touch this survey with a barge pole.

Regards,
Mark M

[Kira]

To get a survey/research study like this approved, they almost certainly have to go through an Institutional Review Board (IRB) process to get their protocol approved. IRB approval (or IRB exemption) is needed if the study is funded with government money, directly or indirectly. In this case, the study is directly funded with gov't money, from the National Institutes of Health (NIH).

With human subjects research, there are a bunch of hoops for researchers to jump through to make sure that privacy is protected, risk is minimized, participants are fully informed about what they are getting into, etc.

When identifiable Personal Health Information (PHI) is involved (such as medical records data), researchers must take additional steps to keep that information private. Only approved researchers would have access to medical records. They would gather specific information and (usually) fill out forms with that data. On these forms, participants may be given identification numbers instead of using their names (i.e. #5246). The completed forms usually have only abstracted, de-identified data (essentially no personally identifiable information and few irrelevant details).

Steps are taken to protect privacy. For instance, they will often not keep any record of which number is assigned to each participant, or they'll store the master list of names & numbers separately from the data forms, under lock-and-key with limited access. In other words, if they have a list that says #5246 is Jim Smith, the list would be kept locked up, separate from the data forms that contain info from the medical records. Often, they destroy these lists and/or data forms once the study is over.

Another typical IRB requirement is that participants MUST be informed about potential risks, and they have to give informed consent. They include potential risks like personal data accidentally getting into the wrong hands.

About the HMO knowing that participants are on pain meds... study or not, they have this info from their records of insurance claims. Every time they pay for a prescription, procedure, or office visit, that information ends up in their database as a code signifying what they paid for. They can search that database to generate lists of members. For instance, they could make a list of every HMO member who has been in the ER with asthma in the past 6 months. HMOs do this fairly often for non-research reasons, such as to send out targeted mailings (like a newsletter for people with kidney failure, or a reminder for diabetics to get their hemoglobin A1c checked every 3 months).

About doctors not being notified about participation... this is pretty standard, too, unless the study is a drug trial or something else that would mess with participants' treatment. They shouldn't have to talk to the doctor about medical records, either. The medical records department should be able to handle any requests for records. Plus, they may not even need the actual chart... they may be able to get all of the information they need from "claims data," available directly from the HMO.

If researchers want to get a study published... and/or if they want their study to be viewed as credible by the rest of the scientific/medical community... then getting IRB approval is just another necessary hoop to jump through. If they don't get IRB approval BEFORE they start collecting data & working on the study, then their funding is jeopardized. And, since this study has NIH (National Institutes of Health) funding, we can be pretty certain that they HAD to get IRB approval in order to do this study.

If anyone is curious, here are some links about the IRB process.

Links:
http://en.wikipedia.org/wiki/Institutional_review_board
http://info.gradsch.wisc.edu/research/hrpp/9.public.html
http://www.hhs.gov/ohrp/irb/irb_guidebook.htm
http://research.seattlechildrens.org/rss/irb/institutional-review-board.asp
http://xnet.kp.org/irb/

[DDC]

I am sorry I would not do any survey's they can get all the info if they wanted anyways. Just sounds to fishy to me.

[GardeniaGirl]

Kira thanks for taking the time to write all that out. Quite informative.