2:50 - 2:55 pmSaturday, September 17
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Are there simple customer-service barriers between people with ALS and clinical research studies?
Upper Lobby
Are there simple customer-service barriers between people with ALS and clinical research studies?
Med X ePatient Scholar
BackgroundAccording to Bedlack et al http://www.ncbi.nlm.nih.gov/pubmed/18608092 few people with ALS choose to participate in clinical research studies.Many hypotheses on the reasons for low enrollment... Read more

Description

Background
According to Bedlack et al http://www.ncbi.nlm.nih.gov/pubmed/18608092 few people with ALS choose to participate in clinical research studies.

Many hypotheses on the reasons for low enrollment have been offered, and there is a continuing frustration expressed by neurologists that it is difficult to get people with ALS to volunteer.

Anecdotal reports that I have heard from some people with ALS indicate that they would very much like to be involved in clinical trials, but they don't get information on them within their very short window of eligibility. And when they do inquire on specific trials, patients can become frustrated over lack of timely communication, inconsistent information, and restrictions that were not listed in the online exclusion criteria.

Are there some basic, easily corrected customer-service barriers that today negatively affect ALS research study enrollment?

Method
I propose a secret-shopper project to measure and report on basic customer service and responsiveness.
Today there are 51 open, recruiting, interventional ALS studies at clinicaltrials.gov. Many of those are offered at multiple sites. I will contact each site via an alias email account and will inquire on behalf of my fictitious aunt who has recently been diagnosed with ALS. For US trial sites, I will ask:

  • Is the trial still available?
  • Will they accept a patient from outside of the immediate area?
  • If the patient starts bi-pap or a feeding tube, can she stay in?
  • Will she get the drug after the trial?
  • Do they reimburse for any travel expenses?

I will conduct the research during March and April, 2016. Already in preparing the project I have learned lessons. Organizing the information is not easy for me, and I’m not a current caregiver or new to ALS.

Detailed logs of the communication will be kept.

Results
I’ll assemble summary data that will include some very basic statistics. Response time, accuracy, and tone will be included. In addition, I suspect that there may be some individual experiences that might be valuable to cite.
If my hypothesis is right, some customer-service issues will be apparent. If my hypothesis is wrong, then I will happily share that things are good on the customer-service front, and we will know what the root cause of low enrollment is not.

Conclusion
The secret shopper will discover the answer by the end of April.

Concerns
I personally considered the ethics of a secret shopper using the time of those involved in clinical research. I truly believe that the results of this project will be enlightening, will help speed up trial enrollment, and therefore will speed up ALS research.

Confidentiality
I hope you can keep this project as confidential as possible as I gather data. If it were to leak during that process, it would spoil the results (kind of like letting the patients know which one is the placebo). Thanks very much.

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