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- 1. Proposing a ‘Consent Commons’ in open education Balancing the desire for openness with the rights of people to refuse or withdraw from participation Dr Jane Williams, University of Bristol Suzanne Hardy & Dr Megan Quentin- Baxter, Higher Education Academy Subject Centre for Medicine, Dentistry and Veterinary Medicine, UK All slides cc: by-sa unless stated otherwise.
- 3. cc-by Some rights reserved by Seattle Municipal Archives http://www.flickr.com/photos/seattlemunicipal archives/3786098177/
- 5. Clinical setting Academic setting •Doctor collects consent •Recordings taken •Consent for recordings stored with patient record •Clear guidance available •Recordings incorporated into educational event •Uploaded to VLE •No evidence of consent •No access to patient record •Location of risk unclear We all want to do the right thing!
- 6. © = Consent = ?
- 7. www.medev.ac.u cc by-nc Some rights reserved by Gary Owen http://www.flickr.com/photos/garyowen/2176413267/
- 8. Consent everything-even where ownership and patient/non-patient rights appear clear, and store consent with resource
- 9. consent commons Consent Commons ameliorates uncertainty about the status of educational resources depicting people, and protects institutions from legal risk by developing robust and sophisticated policies and promoting best practice in managing information.
- 10. Pathways for Open Resource Sharing through Convergence in Healthcare Education (PORSCHE) Seamless access to academic and clinical learning resources for healthcare students contact: lindsay@medev.ac.uk www.medev.ac.uk/oer/ #porscheoer #ukoer #medev cc: by Tony the Misfit http://www.flickr.com/photos/tonythemisfit/2580913560/
- 11. • A common code of practice and a set of guiding principles • Facilitates cultural change Reusing healthcare recordings
- 12. cc:by-nc Some rights reserved by gruntzooki Source: http://www.flickr.com/photos/doctorow/2496308570/
Notes de l'éditeur
- Introductions Who we are where we are from Why we are here NB Megan isn’t here. This is really a very trinverate collaborative effort between three of us all involved in different projects.
- SH There is a history in the UK of funding programmes to create and share materials e.g. build shared images banks and shared elearning materials. Every time we look at healthcare as a subject we have patients: issue of consent JISC funded study at Edinburgh published in 2005 which proposed what was then called a ‘clinical commons’ – a common consent and licensing model. In five years the concept has become more refined At the time that study was published it was still quite blue sky – not sure people knew what to do next Creative Commons much more established and used more now than ever, it is beginning to be understood in UK HE as something which is useful and helpful, and provides us with a recognised framework around which to build this idea. OER movement – towards more open sharing JW Technology facilitates easy capture and onward transmission of recordings Patients want to share to help the next generation of doctors and other patients, doctors want to get it right – huge background of altruism and a real desire to share
- JW Clinically sensitive recordings are vital to good teaching and learning within the healthcare professions. About respect for people and honouring their expectations and behaving properly. Patients, their families and healthcare workers are often willing to collaborate with educators by sharing their story as told in a podcast, video or acted out by a role player; allowing recordings including photographs and x-rays to be taken for teaching purposes; or agreeing to their ‘case’ (medical history/patient record) being adapted for presentation to students, etc. Healthcare workers, academics, students and other people (such as contracted film crews and actors) often participate in the development of such resources. All of these are entitled to be treated with respect and in some cases (actors) professional bodies or guilds may have their own rules about how recordings of that person may be used and reused.
- SH We are here to talk about a proposal for a consent commons which will allow us to deal with the additional issue of patient and non-patient consent in reusing and sharing clinical recordings for use in open resources to support healthcare education, against a real desire to share. We need to be able to capture and share clinical recordings for use in learning and teaching and while we can deal adequately with copyright we have no structure for dealing with consent in OERs. Copyright and licensing is about ownership Consent is about the right to take and the right to disclose, and relates to privacy and confidentiality.
- JW Then SH Here is the problem. OERs move across clinical and academic settings. The same person might be making and delivering materials. They may be, or the recordings used within them are collected by clinicians under rigorous guidance both at a national (GMC) level and a local trust of health authority level. When these materials are then delivered in an educational event in an academic setting things can go awry. This slide illustrates one of the things that is special to our project and other healthcare projects: Where we have clinicians who are paid by the NHS, who create materials in clinical settings, but deliver them in academic settings under an honorary contract with the university but who are not paid by that university Where then does risk and responsibility lie? Enlarging on this a bit further, what we have on the left is a very clear process for taking cosent for using recordings within a clinical setting for treatment, research and ‘local’ education. On the right however, we then wish to re-use images and incorporate them into VLEs, share materials, etc. But no evidence of consent, we don’t have access to the patient record. And so the location of risk is unclear. What we do know is that both the clinical organisation and the academic organisation both want to do what is right. It is not clear where the responsibilities of the clinical setting end – what happens once images left their patch? On the other side, universities are beginning to be aware of their responsibilities but have no mechanisms to handle them But all want to do the right thing. Mobilty of image around the world and the fact that resources are being shared whether they were intended to be shared or not Universties are not aware of their responsibilities in this setting Doctors want to do it properly Universities want to do it properly No mechanism is currently in place to support them doing that
- What we need is something that works alongside copyright and licensing regimens to give us something to evidence or give provenance to materials which required consent under data protection law, so that onward transmission sharing and reuse becomes easier, and we can open up more healthcare materials to use as OERs. Consent is a currently a barrier to open release as legacy materials can’t evidence the consent status of clinical recordings – so we end up with non-commerical no-derivatives licenses as a default rather than a fallback position, where we can apply them. Everyone wants to use more open licenses but needs to be able to evidence consent.
- SH So does anyone thing there is a problem with this slide? Should we get consent to use images like these in learning and teaching? JW …..
- JW The OOER project recommended just getting consent – and then we are clear. SH We feel this is something we should all be doing anyway – in the same way we collect and store consent for treatment and research. And in the same way as we reference in publications. It should be as easy and as embedded in practice as that. Its about good practice which is easy and practical to implement. It’s about covering our backs and trying to think further down the line – making the consent status clear for other users who may use this recording in a different way. What a consent license could do is make the patients rights clear alongside the owner’s rights.
- SH We would like to propose a consent commons to work alongside or with creative commons as a way of demonstrating due diligence in dealing with issues of consent and using patient data sensitively in learning and teaching with specific reference to being able to share.
- How are we taking this proposal forward? Developing the consent commons proposal with support from friends at creative commons uk, we are working with the NHS eLearning repository to encourage further use of creative commons licenses for educational materials in the NHS, and we are linking with other projects looking at the cultural change aspects of the proposal. JW
- JW
- So help is on the way in making more clinical teaching materials available. What we would like is feedback from other people – like you! Please do talk to us about our ideas and let us know if you think they would be useful in other situations. Performers may find this useful for example…… Catch us anytime during the conference or …
- Email us. We really would love to hear from you!
- Thanks for listening…..