The use case is, we’re presenting users with a Questionnaire for a particular assessment screening they can partake in. We would like to add an additional question to this Questionnaire that asks them if they wish to opt out of the screening and why. We found answer codes for various opt-out or refusal reasons - but trying to locate a standard question, with a LOINC that’s intended to promote answer codes like that.
Any help is appreciated!
Hi Chason,
Working with opt-out reasons for a survey can be a bit challenging. The ability to opt-out may be stipulated in an organization’s privacy policy or may be mandated through jurisdictional law. The exact text used for opt-out is extremely variable and may include hyperlinks to privacy policy or jurisdictional law, so it would be extremely difficult to come up with “boiler plate” type langauge.
For example, Opt-out form Survey contains the following text:
I wish to opt-out of being notified about mental health research opportunities that are happening in Cardiff and Vale UHB Mental Health secondary care services.
Opt-out may require the capture of several data elements depending on what the patient is opting out of. For example, if the patient is opting out of a research study the date, digital signature, etc. may need to be captured in association with the opt-out.
I don’t think there is a single simple answer to this question that can be encompassed by a single LOINC code and answer list. That being said, I would invite you to bring this to the LOINC clinical workgroup for discussion.
Thank you for the response John.
To provide a little more context, the particular surveys we’re working on where this came up are a Depression Screening and a Social Determinants of Health Assessment. We are going to be presenting these surveys to end users in the form of a Questionnaire. These screenings are structured questions and answers (example of one: LOINC 44249-1 PHQ-9 quick depression assessment panel [Reported.PHQ]) and the goal is to allow customers to be able to perform these to meet various eCQM, dQM, IQR or other types of measures.
Per the specifications of most of these measures the patients can be excluded from the calculation if they refuse to participate in the screening (which could be something they’re accessing away from the hospital or being asked in person) or they cannot complete it due to a medical reason.
We were imaging this as an additional question on the Questionnaire that can be answered. Where can I find out more info on the LOINC clinical workgroup?
Thank you again
Hi Chason,
If you are offering a patient the opportunity to “opt-out”, shouldn’t they be given that opportunity prior to ever being sent a link to participate in the survey or be presented with any of the survey questions? Trying to think this through from both a clinical and electronic workflow perspective. When the patient is invited to participate in the survey, that would be the point at which the patient should be given the opportunity to “opt-out”. IMHO, a standardized survey, especially if copyrighted, should be treated as a normative standard and should not be altered to include additional questions to represent “opt-out” or to capture a “reason not to participate”.
It may be prudent to align with how research organizations handle the workflow to “opt-out” of a research study. It may be a slight bit of over-kill, but if that workflow will pass an IRB review then it should stand up to legal review, which may be important in the case of depression and other medically related surveys.
Information regarding the clinical can be found at Clinical LOINC Committee – LOINC
I hope this helps.
Yes, I would agree. I see 2 opt out scenarios there: 1) I want to opt out of being sent messages, regardless of what it is and 2) I’m fine getting messages, but I don’t want to answer these questions - which would seem like a per survey decision on their part.
The main scenario we’re working on currently is where the clinician is sitting with a patient in either an inpatient or clinic setting and asking them the questions. Correct, this kind of question is not part of those structured surveys, but it is a question that is being asked beforehand even in person - “Will you take this survey/answer these questions?”. I also agree with you from a workflow perspective this would be something answered before the clinician even asks them the main survey questions, most likely. That is what led us to try and find a way to represent this question in a structured way, since it’s not a part of the normative standard.
Thank you for the information.