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How to safeguard online data collection against fraud

The COVID-19 pandemic has forced large numbers of researchers to move their studies from the laboratory to the internet. In some ways, this has been a good thing — decades ago, a global pandemic would have shut down research entirely. Now, scientists can use social media, online registries and crowdsourcing tools such as Amazon Mechanical Turk to recruit participants to take surveys or perform tasks, without investing much time or money.

But as helpful as these online tools are, they are not without risks, says Clare Harrop, assistant professor of allied health sciences at the University of North Carolina at Chapel Hill. When she and her team tried to recruit participants for a study in 2019 by sharing a link to a survey on social media, they received a torrent of fraudulent responses — presumably from someone who wanted the $5 gift cards her team offered respondents as compensation.

After the pandemic began and so much research moved online, Harrop and her colleagues knew that they needed to spread the word about what had happened to them, so they wrote a letter to the editor, published in Autism Research in January. Harrop spoke with Spectrum about her experience and shared some tips on how other researchers can protect themselves from fraud.

Spectrum: Tell me about the project you were working on when you ran into this issue.

Clare Harrop: This data collection was part of a large outcome measurement grant led by Brian Boyd to create a measure of behavioral inflexibility for autistic children and then extend that to children with neurogenetic conditions — Down syndrome, Prader-Willi syndrome and fragile X syndrome. Most of my research focuses on sex differences, and the majority of my work has been done in person, but for this project we had used a magnitude of methods: focus groups, online surveys and in-person assessments.

S: What did the process of online data collection look like?

CH: We had an online survey led by Luc Lecavalier at Ohio State University that we used to collect data from nearly 1,000 parents of autistic children to validate the behavior inflexibility scale we created. For that survey, we worked with the Interactive Autism Network’s databases of parents who had consented to be contacted for research. And then we have since used other registries to extend the survey to parents of children with fragile X or Down syndrome.

We also meant to include Prader-Willi syndrome, but that survey dataset was victim to fraud. So that data never got collected.

S: Why was the situation so different with Prader-Willi?

CH: What happened is we worked with a national society, and they don’t have a mailing list like the other groups do. So we launched the survey via social media, and it was shared. And that’s where the issue came up. Initially, we had a very slow response, which is what you would expect. Prader-Willi is a rare genetic syndrome — you wouldn’t expect 300 parents to complete it in two days. That population isn’t readily accessible.

S: How did you find out that some of your data were fraudulent?

CH: Around day three, I remember I was in a meeting, and I had my laptop open and was answering all these emails from our data management team. And they said, “The survey is at capacity; it’s all filled out.” And I was like, “No, no, that’s not normal,” — our capacity was about 150 or 200 — “that’s not right; there is no way that we’ve gone from about 20 participants to all of this. There’s no way all these people filled it out.” And our data management team pushed back and said, “Oh, someone really popular must have shared it, like a parent that knows a lot of people.” And I was like, “No, no, it isn’t.” So we shut it down.

And then we had to go through the painstaking process of combing through the data, which took days. It was very clear that it was fraudulent data. The way we figured it out is that these surveys were started within minutes of each other, so it’s almost like someone had them open on multiple servers, and the surveys were done very quickly. We tell parents, “Oh, this survey might take between 30 minutes and an hour.” So when all your surveys are filled out within two minutes, you know that there’s probably a problem. We collected names in the survey to send gift cards, and they were famous names. There were a lot of baseball and basketball players.

S: How did this affect the rest of your research?

CH: We had to go to all our other datasets to check that the same thing hadn’t happened. And fortunately, it hadn’t. We looked at response rates; we looked for duplicate responses. And we found only a handful — I think we had 10 or so. Some of them may have been intentional, but for others it was clearly obvious that both of the parents have filled out the form because they both got the email.

It was awful; it was really stressful. It took hours to do it.

S: What are you doing to protect yourself from fraudulent data going forward?

CH: We have a study looking at extending the behavioral inflexibility scale to attention deficit hyperactivity disorder that started just after this happened. We sent unique links to each individual we contacted, which is a lot more work on our part.

One of the things that I’ve noticed helps, because I’ve completed a few online surveys during COVID myself, is to throw in test questions — so suddenly reversing the order of scoring, or just a random question, like “What is three plus four?” And if it’s a bot, or it’s someone going through really quickly, you can catch people that way.

Another option is to use simple tests called CAPTCHAS. And definitely collect paradata, such as how long it takes a participant to complete their answers. That’s really important, as is knowing the typical response rate. Other researchers sometimes use lottery compensation as opposed to compensation for all.

S: Why did you decide to share this experience in a letter to the editor?

CH: We wrote this letter to the editor over a year ago, but we were pushing forward other papers on the project. And then once COVID hit, I just turned around to the co-authors, and I was like, “Look, we’re collecting all this data remotely now. And I feel like we need to get that letter out there, because this is going to be more of an issue with regard to COVID.” So then we turned it around very quickly and submitted it in November.

S: Outside of the COVID-19 context, are there benefits to collecting data online, despite the risk of fraud?

CH: We know that autistic adults have a preference for screen-based media. So social media is great for recruiting adults in a way that’s comfortable for them, rather than having them come into the lab and doing intensive interviews. It also allows us to increase our catchment areas and get a representative sample. And when we’re thinking about rare genetic conditions, those participants are otherwise especially hard to get. I work with autistic females, and they’re not that easy to get into the research clinic, either. So social media does give us a way to get bigger samples.

It’s hard because we know that people use social media a lot, particularly for work with autistic adults. I don’t think we should stop using it. But I think there are ways to make sure it’s not fraudulent.

The post How to safeguard online data collection against fraud appeared first on Spectrum | Autism Research News.

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Your protected health information may also be used and disclosed to pay your health care bills and to support the operation of our practice.
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(vi) Legal Proceedings: We may disclose protected health information in the course of any judicial or administrative proceeding, in response to an order of a court or administrative tribunal (to the extent such disclosure is expressly authorized), or in certain conditions in response to a subpoena, discovery request or other lawful process.

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(x) Military Activity and National Security: When the appropriate conditions apply, we may use or disclose protected health information of individuals who are Armed Forces personnel (1) for activities deemed necessary by appropriate military command authorities; (2) for the purpose of a determination by the Department of Veterans Affairs of your eligibility for benefits, or (3) to foreign military authority if you are a member of that foreign military services. We may also disclose your protected health information to authorized federal officials for conducting national security and intelligence activities, including for the provision of protective services to the President or others legally authorized.

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Others Involved in Your Health Care or Payment for our Care:

Unless you object, we may disclose to a member of your family, a relative, a close friend or any other person you identify, your protected health information that directly relates to that person's involvement in your health care. If you are unable to agree or object to such a disclosure, we may disclose such information as necessary if we determine that it is in your best interest based on our professional judgment. We may use or disclose protected health information to notify or assist in notifying a family member, personal representative or any other person that is responsible for your care of your location, general condition or death. Finally, we may use or disclose your protected health information to an authorized public or private entity to assist in disaster relief efforts and to coordinate uses and disclosures to family or other individuals involved in your health care.
6. Uses and Disclosures of Protected Health Information Based upon Your Written Authorization Other uses and disclosures of your protected health information will be made only with your written authorization, unless otherwise permitted or required by law as described below. You may revoke this authorization in writing at any time. If you revoke your authorization, we will no longer use or disclose your protected health information for the reasons covered by your written authorization. Please understand that we are unable to take back any disclosures already made with your authorization.
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Following is a statement of your rights with respect to your protected health information and a brief description of how you may exercise these rights
1. You have the right to inspect and copy your protected health information
This means you may inspect and obtain a copy of protected health information about you for so long as we maintain the protected health information. You may obtain your medical record that contains medical and billing records and any other records that we use for making decisions about you. As permitted by federal or state law, we may charge you a reasonable copy fee for a copy of your records.
2. You have the right to request a restriction of your protected health information
This means you may ask us not to use or disclose any part of your protected health information for the purposes of treatment, payment or health care operations. You may also request that any part of your protected health information not be disclosed to family members or friends who may be involved in your care or for notification purposes as described in this Notice of Privacy Practices. Your request must state the specific restriction requested and to whom you want the restriction to apply.

We are not required to agree to a restriction that you may request. If we agree to the requested restriction, we may not use or disclose your protected health information in violation of that restriction unless it is needed to provide emergency treatment. With this in mind, please discuss any restriction you wish to request with your health provider.

You may request a restriction by making your request in writing to our Privacy Officer. In your request, you must tell us (1) what information you want to limit; (2) whether you want to limit our use, disclosure, or both; and (3) to whom you want the limits to apply, for example, disclosures to your spouse.
3. You have the right to request to receive confidential communications from us by alternative means or at an alternative location
We will accommodate reasonable requests. We may also condition this accommodation by asking you for information as to how payment will be handled or specification of an alternative address or other method of contact. We will not request an explanation from you as to the basis for the request. Please make this request in writing to our Privacy Officer.
4. Your may have right to amend your protected health information
This means you may request an amendment of protected health information about you in a designated record set for so long as we maintain this information. In certain cases, we may deny your request for an amendment. If we deny your request for amendment, you have the right to file a statement of disagreement with us and we may prepare a rebuttal to your statement and will provide you with a copy of any such rebuttal. Please contact our Privacy Officer if you have questions about amending your medical record.
5. You have the right to receive an accounting of certain disclosures we have made, if any, of your protected health information This right applies to disclosures for purposes other than treatment, payment or health care operations as described in this Notice of Privacy Practices. It excludes disclosures we may have made to you if you authorized us to make the disclosure, to family members or friends involved in your care, or for notification purposes, for national security or intelligence, to law enforcement (as provided in the privacy rule) or correctional facilities, as part of a limited data set disclosure. The right to receive this information is subject to certain exceptions, restrictions and limitations.
6. You have the right to obtain a paper copy of this notice from us
upon request, even if you have agreed to accept this notice electronically.
D. COMPLAINTS
You may complain to us or to the Secretary of Health and Human Services if you believe your privacy rights have been violated by us. You may file a complaint with us by notifying our Privacy Officer of your complaint. We will not retaliate against you for filing a complaint

You may contact our Privacy Officer at (704) 824-7800 for further information about the complaint process.

This notice was published and becomes effective on August l, 2011.