Survey on the use of health data and securing privacy at APST.
The Westfälische Wilhelms-Universität Münster and the Freie Universität Berlin conduct a survey in cooperation with APST on the topic of “Use of health data and securing privacy”.
The goal of the survey is to learn how people with amyotrophic lateral sclerosis (ALS) perceive and value the collection of health data for various uses.
Despite increasing numbers of users of Ambulanzpartner, there are no systematic insights yet available on how you, the patients, evaluate the various uses of data by the platform.
Only by including your perspective is it possible to better understand the possibilities and limitations of data-driven health management. We want to help develop health platforms that provide efficient care for those affected and promote medical research while protecting your privacy.
As a digital platform, Ambulanzpartner links patients with outpatient clinics, caregivers and providers. Here, the central management of health data plays a crucial role. The platform’s operational business relies heavily on the collection, storage and use of sensitive health data. With explicit consent, Ambulanzpartner continues to use anonymized data to drive research in the care and healthcare industry. In addition to the platform, Ambulanzpartner offers other digital services such as an app that can be used, among other things, to evaluate the course of a patient’s illness.
We would therefore like to thank you very much for taking part in the survey!
The questionnaire consists of 35 questions related to health data and the ALS Functional Scale. Participation in the survey takes about 15-20 minutes. The survey is anonymous and does not allow any conclusions about your person.
Responsible for the questionnaire are:
Prof. Dr. Stefan Klein – Westfälische Wilhelms-Universität Münster
Prof. Dr. Daniel Fürstenau – Freie Universität Berlin
Katharina Dassel – Westfälische Wilhelms-Universität Münster
Your contact for comments, suggestions or questions