Thank you very much for taking the time to fill in this questionnaire. It is our intention toknow more about how you understand the UKSH patient information document concerning the use of data and biomaterial for medical research. This will help us to improve the documents.
Please return the questionnaire to our colleague Ms. Wolff or send it back to
Geschäftsbereich Medizinethik
Institut für Experimentelle Medizin
z.Hd. Gesine Richter
Christian-Albrechts-Universität zu Kiel
Arnold-Heller-Str. 3, Haus 28
Thankyouverymuch.
For reasons of better readability, we only use the male form in the following.
Personal details
1. Please inform us about your age, sex and the disease that brings you here today.
Age: 18-30 31-45 46-60 61-75 76-90
Sex: male female
Disease:______
2. Please inform us about your degree of education (highest degree).
Grund-/Volksschule Haupt-/Realschule Gemeinschaftsschule
Abitur/Fachabitur Hochschulstudium
other degree, please specify______
3. Do you work in the health care system? If so, please specify.
______
4.Have you participated in a medical research study before?
yes no
5. Before you read this patient information document what did you think would happen with your remaining biomaterial resulting from you current treatment at the UKSH?
______
Patient information document „Data and Biomaterial for medical research“: Understanding
6. Is thepatient information document
too short too long just right
7. Did you think the content of the information document is intelligible?
yes no partly
8. If you did not understand anything, what was the reason for that (multiple answers
possible)?
did not understand technical terms too much information too little explanation
too long language too difficultIread too quickly
I am not especially interested in the content I have not asked questions
I was too nervousI have asked questions but did not understand the answer
other ______
9. How could we improve the information document?
______
We would like to understand whether the information document as it is now can be understood well. Therefore we would like to ask questions concerning your understanding. Pleaseanswerthewayyouunderstoodtheinformationgive in thedocumentyou just read.
10.Ifin the course of the research with my data and biomaterial something is found out that is relevant to my health, this will be reported to me.
correctnot correct I am not sure
11. Which statement is true according to the information document?
My data and biomaterial can only be used for research questions that relate to my disease.
correctnot correct I am not sure
My data and biomaterial can also be used for any other medical research question.
correct not correct I am not sure
I can withdraw my consent to save the data at any time. Data and biomaterial will be deleted as far as it is technically possible.
correct not correct I am not sure
If I have consented that my data are saved, I cannot withdraw this consent.
correct not correct I am not sure
My data and biomaterial will only be dealt with at the UKSH.
correct not correct I am not sure
My data and biomaterial might also be handed over to interested researchers who work on relevant medical research projects and have the approval of a research ethics committee.
correct not correct I am not sure
An unauthorized tracking back of data to my person is completely impossible.
correct not correct I am not sure
12. What is correct?
From the research with my data and biomaterial
I could have a direct personal benefit for my health.
futurepatientsmightpotentiallyhavebenefitsfortheirhealth.
onlyresearchandmedicalscience will benefitregardingtheirfurtherdevelopment.
Consentandmotivation
13. Have you given your consent to the research with your data and biomaterial?
yes no
14. If you have done so, why did you consent (multiple answerspossible)?
I hope I will personally benefit from the research with my data and biomaterial.
I wouldliketosupportmedicalresearch in general.
I wouldliketohelpotherfuturepatientswiththe same disease.
I would like to help other future patients, no matter what disease they have.
I would like to benefit from the advantages of medical research,therefore I should also make a
contribution to it.
I would like to act as a role model for other patients.
Being a patient myself, I feel connected to future patients and would like to do something forthem.
I am interested in medical research and would like to be part ofit.
I know other patients who consented andthis persuaded me to consent, too.
I am grateful to my doctors and give my consent in order to help them with their work.
I worry that I will have disadvantages or that my treatment will suffer if I do not give my
consent.
I have not thought about the use of my data and biomaterial, I do not care.
other: ______
______
15. If you have not done so, why did you not consent?
______
______
______
______
Evaluation of individual elements
Please answer these individual questions:
16. Research using biomaterial may lead to results that could be relevant to your personal health. However, most of these results are either of low quality or may turn out to be incorrect. If you had a choice, what kind of feedback would you wish to receive?
I would like to receive no feedback at all.
I would like to receive feedback only on results that are are of obvious relevance for my
health.
I would like to receive feedback only on results that are of at least likelyrelevance
for my health.
I would like to receive feedbackon any and all results.
17. The current practice of UKSH Campus Kiel, and of many other German medical centers, is to give no feedback at all on research results that may be of clinical relevance. Do you find this is appropriate?
yes no not sure
Thank you very much for helping us!
1