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Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

We can do a better job on screeners!

April 17, 2020 Wes Michael

I’m going to be talking market research speak here. Screeners! Screeners are so important. They are the tool to make sure we have the right people in a study. They should exclude those who don’t qualify and include those we want. Sounds simple, but we as an industry can do a much better job on our screeners. Let me share a few things we have seen.

 

One item is very pertinent to the many projects that we recruit for that include both patients and caregivers. Many clients use a technique that appears very logical. They ask if the respondent has been diagnosed with a disease. If not, they ask if they are a caregiver. Makes sense because the caregiver isn’t diagnosed. But here’s the problem. Caregivers are so used to answering on behalf of the patient, if the first question they see is, are you diagnosed with, for example, Hemophilia, and they take care of a hemophilia patient, they will be tempted to answer yes. They think maybe the question is written wrong. They see the emphasis on the disease, in this case Hemophilia, not on whether they personally were diagnosed. So, they answer yes, get on the patient track, and can never recover!

 

Here’s how we recommend doing that. Start off with a question identifying them as either a patient or a caregiver, which will be very clear to them, and then take them down the patient or caregiver path. Problem solved!

 

Another item we sometimes see – asking key screening criteria as a yes or no question. Have you been diagnosed with HIV? Yes or no. Do you take Keytrada? Yes or no. Now while the vast majority of respondents want to be honest, this is like telling them what the right answers are to get picked. Not to get religious, but “Lead them not into temptation!” Give them a list to choose from. Which of the following diseases have you been diagnosed with? Which of the following medications do you currently take? If usage of a medication is critical, you may even ask the respondent to provide a picture of the medication – easily accomplished now that most respondents all have cameras on their phones.

 

Speaking of key criteria, sometimes a client or IRB requires the patient provide physician confirmation of their diagnosis. This is possible, and takes time and effort – the patient has to go or call their doctor and get a form faxed, etc. If that is necessary, make sure the respondent has otherwise qualified. We can’t have people go to all that trouble, prove that they have been diagnosed, and then be disqualified because they aren’t in the right age range, or their spouse works for a pharmaceutical company. Get the less onerous questions out of the way first!

 

Another pet peeve of mine – asking too many screener questions that aren’t for screening! Don’t do this. Save those questions for the study. The screener is to figure out who will qualify. Keep it short, with the essential qualifying criteria. If it goes too long (say, 10 mins) you should be paying people for their time. It is not a free survey. We get complaints from patients who don’t qualify and feel they have provided a lot of information. Don’t abuse their trust in us!

 

Finally, let me do a shout out to David F. Harris, who has written the best market research book on writing surveys: The Complete Guide to Writing Better Questionnaires: How to Get Better Information for Better Decisions. I’m sure he has more tips on screeners. Here is a link to David talking about his book: https://www.youtube.com/watch?v=x2ZGGWKrCQU Note – I’m not getting anything to promote his book, only the satisfaction that we’ll see better questionnaires!

 

 

Filed Under: Business

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