Patient experience & informed consent (the real opt-in!)

Any processing of health data (and therefore any medical research or care act) is accompanied by a prerequisite: informing the patients concerned or collecting their consent or their opt-out. To facilitate this step, we have developed an optimized patient pathway and set up a method for collecting "informed consent”.

A SIMPLIFIED AND SECURE PATHWAY FOR PATIENTS - INFORMATION WITH OPT-OUT

The "traditional" method of collecting consent is tedious, both for health professionals and for patients. On the healthcare professionals' side, they have to print information sheets for each patient, write addresses on the envelopes, and then mail them (which is expensive if a large number of people have to be contacted!). Patients who receive the consent form must send it back at their own expense, which may be perceived as unpleasant and lead them not to follow up.

When it comes to simply informing patients that their data will be used, the process is even more unfortunate for them. They may be informed by paper mail, with the difficulties mentioned above, or by e-mail, which does not guarantee good traceability or opening rates, and reveals medical condition in non-secure email. 

Sometimes, patients are not even directly informed. They must then regularly consult the websites of their health care centers to keep abreast of ongoing medical research, and possibly to opt-out to the use of their data. Who looks at the websites of their hospitals every day? We don't blame you; nobody does...

Our Isalid platform puts an end to this complexity and lack of transparency.

The patient pathway is greatly simplified. Contacted by e-mail, SMS or post mail, the patient accesses the platform directly by clicking on a link (or by scanning a QR code in the case of paper mailings). He connects or registers in a few clicks. Then, he discovers all the information concerning the use of his health data: the name of the study, the institution carrying out the study and the information or consent notice (specifying the data concerned, the use that will be made of it and the length of time it will be kept). The patient accepts or refuses, and that's it! They can even change their mind and reconsider their decision at any time. If they encounter difficulties at any stage of the process, they can easily contact us.

The patient pathway is also secured from end to end. For example, the preparation of paper mail is handled by machines, so that no human can read what's inside the envelopes. Similarly, users log in to Isalid with their password and date of birth to double-check their identity.

WHAT IS ELECTRONICAL INFORMED CONSENT?

For consent to be valid under regulations, it must be "informed": the patient must have all the information necessary to make an informed decision.

To ensure that the patient understands what they are agreeing to, we may add one or more questions to the Isalid form. For example, we may ask, "You have just consented to the use of your data in a breast cancer study. True or false? This check both enhances GDPR compliance and helps its patients make informed decisions.

If a patient has given consent but answered the questions incorrectly, the health care provider may choose not to use their data in the study or may contact them directly to re-explain the context.

Other behavioral methods and technological bricks can be deployed on Isalid to go further in the characterization of the "enlightened" criterion. But shhh, all this is still a secret (because of the patent pending), we will reveal it soon in another article!

Isalid is the guarantee of an informed e-consent, collected through a fluid and efficient patient pathway!