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I'm working on a side project to help improve patients' healthcare outcomes. This is an independent project and I am not affiliated with any organization. I want to learn about people's experiences in healthcare. Specifically I want to learn how doctors and healthcare professionals failed to treat patients or meet their needs.

This of course presents many ethical and legal concerns, and as this is an independent project, I want to be especially careful. I also have to conduct this research in a lean way as my time is limited.

So, any suggestions on how to get started? Is there an existing body of research that I could sift through to avoid having to do my own research?

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    You could anonymize the data (patients & doctors and other personal details), and from there you could ask more direct questions. Make it clear that personal information will not be recorded and/or collection. – Majo0od Apr 11 '17 at 15:51
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    You're right, you're putting yourself in a tricky situation. I work for a health insurance company and we have strict rules around gathering, storing, and sharing data that might include patient information. (It sounds like you're not affiliated with an IRB, who could provide their requirements, right?) – Ken Mohnkern Apr 11 '17 at 15:52
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    Right, @KenMohnkern . Research may be impossible, unfortunately – user50599 Apr 11 '17 at 17:01
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    You're just looking for patient satisfaction? There must be something published about that somewhere. You might want to add scholar.google.com to your bookmarks. – Ken Mohnkern Apr 11 '17 at 17:05
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    That's fine, but I disagree. The question concerns conducting UX research and designing an experience to help patients, which is all relevant to UX. – user50599 Apr 19 '17 at 13:36
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You could create a release form that people being interviewed have to sign to get written consent of their voluntary participation. There, you can include terms regarding their privacy, and as they mentioned before specify that information will be anonymized. If you are doing the research to improve a system - being open from the beginning, stating your intentions, and the participants written consent would be a good start.

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First and foremost, read all the HIPAA information you can find. There are all sorts of requirements around the training of people who have access to the data, the security of the site where the information will be processed and many other issues that can arise. I've been through the training and my company had to be certified as compliant. The laws are very strict and they are enforced.

As far as research you can sift through, there are several companies that are working in that space and can provide you with accurate information that has been filtered for identifying data. But most will cost you for access as that is their bread and butter.

However, there is something called HCAHPS which is a free database of survey information that might be helpful to your needs located here [link]http://www.hcahpsonline.org/home.aspx

It's not an easy site to sort through but I know the data is there and is available somewhere. lol

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