Key Issue: Ownership & author rights – whose data is on the mobile or on the server, who owns it, what about images? Is the owner the person taking the picture or is it the person in the picture?
Scenario: Who does it belong to?
What benefits to patient care and professional learning can arise through the development and use of a collaborative, crowd sourced, online resource to support the treatment of a particular medical condition?
Researchers are developing and evaluating a collaborative, mobile learning resource – a website where doctors can share ways in which they use new techniques to treat a condition such as psoriasis. It is illustrated using mobile devices with pictures of patients etc. and includes stories uploaded by the children themselves to share their experiences of psoriasis – pain, soothing treatments, esteem issues and so on.
Questions to be considered:
- Who owns the resource and who owns the content?
Is it the doctors contributing their patient data? The researcher who developed the original site? The organisation that is paying for the site hosting? Or do the patients with the psoriasis own the information?
- Where is the data stored?
In Canada, the requirement would be for data to be stored in Canada. Anything hosted in the US is open to Homeland Security. The UK Data Protection Act makes all sorts of provisions for the safe and confidential storage of data however, what if the server is in another country (e.g. Google has data centres in at least six countries)?
- Where does the web resource reside?
Does it belong to university where the researcher works or to the NHS or similar national resource or to the hospital/medical practice where the patient is being treated?
Other issues that may arise:
Is there a charge to access the resource?
Is there a requirement to log in? Do you have to have certain qualifications to access the website? How will its use be monitored and by whom?
Other similar situations:
Any project where personal images or narratives are uploaded and stored on servers whose location is not immediately obvious.