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- 1. Introducing ethical and professional guidance on making and using recordings of people in learning and teaching Suzanne Hardy, Newcastle University, Newcastle upon Tyne, United Kingdom Jane Williams, University of Bristol, United Kingdom Megan Quentin-Baxter, Newcastle University, Newcastle upon Tyne, United Kingdom Debra Hiom, University of Bristol, United Kingdom John Bradfield, Independent Consultant, Bristol, United Kingdom © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 2. Outline • Background – what’s it all about? • Process – what we did • Results – what we made • The tool © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 3. © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 4. © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 5. © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 6. Background • Project funded by JISC to encourage shared understandings between managers and practitioners across both NHS and HE settings on the rationale and good practice for the creation and use of medical recordings for educational purposes • Simple set of principles and guidance materials, covering such issues as informed consent, ownership, transfer between organisations and wider distribution • Synthesises and builds on existing guidance • Materials aimed at students and busy practitioners who need to have specific information to enable them to create, manage or use medical recordings © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 7. British Medical Recordings Task Force • University of Bristol - Centre for Medical Education, R&D / ILRT and JISC Digital Media • University of Newcastle – MEDEV, School of Medical Sciences Education Development • General Medical Council • Institute for Medical Illustrators • JISC Strategic Content Alliance • Wellcome Trust © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 8. From curiosity to confidence: sharing what © 2012 Newcastle University, it takes to 'go open' with learning and Suzanne Hardy cc-by teaching resources 27 April 2012
- 9. Consultation process © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 10. Main issues arising: • Assent vs consent • Difficulties of truly anonymising recordings • Local policies vary and take precedence • Need to make judgements based on individual circumstances • Best practice not always the easiest option • Good communication is key • Take down policies important • Attitudes change over time © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 11. What came out of the process? Online good practice guidance on making and using clinical healthcare recordings for learning and teaching. © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 12. Who’s it for? • teachers or doctors who wish to use a patient recording for learning and teaching • other clinical and healthcare workers • university staff where patient recordings are being made available for learning and teaching © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 13. What does it cover? • Obtaining informed patient consent • Privacy and confidentiality • Copyright and licensing • Storage and access • Transferring across organisations • Ongoing responsibilities • Underpinned by a set of principles © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 14. Acknowledge that patients' interests and rights are paramount – Respect patients' privacy and dignity – Ensure there is appropriate current patient consent for any new recordings – Only access, store, use or share recordings with appropriate patient consent, or anonymise recordings © 2012 Newcastle University, before use Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 15. Respect the rights to privacy and dignity of other people who are included in the recordings, such as family members and health care workers © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 16. Respect the rights of those who own the recordings and any intellectual property rights associated with those recordings, and check and comply with the licences for use © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 17. Take professional responsibility for your making, use and sharing of recordings and alert colleagues to their own legal and ethical responsibilities where appropriate – Wherever possible, make use of existing recordings for which there is appropriate consent © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 18. www.jiscdigitalmedia.ac.uk/clinical-recordings/ © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 19. © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 20. © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 21. Many thanks to our funders and collaborators. Special thanks to everyone who fed into the workshops, gave interviews, filled in the survey, or commented on earlier guidance drafts. We really couldn’t have done it without you. © 2012 Newcastle University, Session 9M, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 22. suzanne@medev.ac.uk twitter.com/hea_medev twitter.com/glittrgirl skype: glitt3rgirl www.medev.ac.uk/ourwork/oer/ © 2012 Newcastle University, AMEE 2012, Lyon, France Suzanne Hardy cc-by
- 23. Attribution and disclaimer • Except where otherwise noted, this ppt file is made available under a Creative Commons Attribution version 3.0 unported licence. • Please include the following phrase ‘© 2012 Newcastle University, Suzanne Hardy cc-by’ • Users are free to link to, reuse and remix this material under the terms of the licence which stipulates that any derivatives must bear the attribution above. Anyone with any concerns about the way in which any material appearing here has been linked to, used or remixed from elsewhere, please contact suzanne@medev.ac.uk who will make reasonable endeavour to take down the original files within 10 working days. © 2012 Newcastle University, AMEE 2012, Lyon, France Suzanne Hardy cc-by
Editor's Notes
- Project has been funded through the generosity of JISC but the emphasis is very much about cross-sectorcollaboration to encourage shared understandings between managers and practitioners across both clinical and educational settings about establishing good practice for the creation and use of medical recordings for educational purposes.The project has quite a long history dating back to 2006 and the publication of a report from Rachel Ellaway, Helen Cameron and Michael Ross at the university of Edinburgh entitled “Clinical Recordings for Academic Non-Clinical Settings”. This was a wide ranging review of the practicalities of sharing and exchanging clinical recordings to support learning and teaching. From this a workshop was set up in 2009 that brought together experts from the NHS and HE sector and tasked with coming up with a number of proposals to form future work. From this developed the idea of a common code of practice and common consent form. The guidance has been built around existing advice such as the GMC’s “Making and using visual and audio recordings of patients.” but the emphasis is much more on use within a learning and teaching environment.
- A British Medical Recordings Task Force was set up to oversee the work – the main partners are listed above. Originally the workshop had described a Code of Practice but discussions amongst Task Force have lead us to believe that a Code of Practice would be too prescriptive and that a better way forward would be to produce a Good Practice Guide around the issues. Already mentioned that there is a lot of good practice and support material out there already but the challenge has been to try to knit this together in a simple way – hence the guidance materials have grown in to a much bigger piece of work than first envisaged. What the task force did produce were a set of high level principles and some good practice guidance materials However in addition to this group there has been a lot of input and feedback from practitioners and interested institutions – many of whom are in the room today
- We ran workshops in London, Newcastle and Bristol
- The image above is aWordle diagram showing all of the institutions that have provided input and feedback to the materials over the life of the project.First public consultation carried out during March and April – went out to the Taskforce, email contacts and trialled at two workshops in London and Newcastle.Materials generally well received and welcomed, number of changes made to the materials based on the feedback and then sent out more widely for a second round of consultation over the summer. Over 80 responses from individuals and institutions within HE and the NHS – a list of acknowledgements on the home page of the site
- Not practical to get informed consent in a radiology department. In Scotland the principle is to get Assent (NHS Ethics Committee) – lot of discussion with GMC and taskforce over this - New GMC guidance suggests that “where practicable” you should get informed patient consent for internal images. If images taken from a pool of assented images you need to make sure you have taken appropriate anonymisation. Difficult to anonymise images even radiographs can be recognisable e.g. X-ray of knife in the chest. Anonymisation canreduce educational value as removes all of the contextual informationClear that local policies vary across clinical and non-clinical settings but also across trusts and universities so difficult to make the guidance too precise and always need to defer to local guidelines and procedures.Tries to point to best practice where possible but will still need to make judgements based on the individual circumstances Need to be able to show due diligence that you should be doing the best you can – communication with patients and copyright holders is key but if you do make a mistake and use a recording for which you don’t have patient consent or the appropriate licence then you need robust procedures in place to make sure you can remove the recording from use. This may be more difficult if the recording has been shared openly but you should have good records in place to at least be able to attempt to remove copies even if you can’t guarantee full removal.Finally public attitudes change over time and need to bear this in mind and continue to review and improve on best practice
- Principles developed over several months with the Taskforce members. Principle 1 - Patient consent - What are my obligations to the patient (patient consent)?This is all about the consent of the patientIt covers the patient's rights of privacy and confidentiality, both personal and medicalInformed consent can only be given by the patient. Patient Consent remains under the control of the patient or their guardian and cannot be given or passed on by anyone else on their behalfThe level of patient consent needs to match the intended use of the recording. Principle 2 - Other people - What are my obligations to any other people included in the patient recording (other people's consent)?This is all about the consent which needs to be sought before making recordings of people in generalIt covers their personal rights of privacy and of confidentialityInformed consent needs to be given by each person in the recordingThis consent cannot be given or passed on by anyone else on their behalfYou therefore need to seek the informed consent of any persons included in the recording, or their guardians, before making and/or using any recordings. Principle 3 - Copyright holders - What are my obligations to the copyright holder?CopyrightCopyright is literally the right to copy and use the recordings for learning and teaching, or any other purposes, as opposed to the physical ownership of the actual recordingThe patient who gives their consent to make and use a recording of themselves, does not own the copyright of that recording. It is the individual author of the material or their employer who owns the copyright. However the holder of the copyright cannot give permission for any use for which the patient has not given their consentPermissions to copy and use the recordings can only be given by the owner of the copyright, and cannot be given by the patient. These permissions are usually given by way of a licenceYou need to be clear who is the copyright holder and seek a licence for the intended use (if necessary). You also need to be aware of moral rights Principle 4 - Professional responsibilitiesWhat are my ongoing obligations to my institution and my colleagues? This is all about how you and your colleagues ensure that recordings are used only for the purposes agreed with the patient and copyright holder (permissions)This covers storage, access, sharing and re-use by othersThere may be institutional policies that apply which should be adhered toNote If suitable recordings with appropriate consent already exist, which you could use for learning and teaching, then it would be better to use these than to trouble patients by making new ones.The guidance materials were then developed around these 4 main principles...
- Will have a chance shortly to look through the materials and again during the receptionThe materials are available on an Attribution-NonCommercial-ShareAlike 3.0 Unported (CC BY-NC-SA 3.0) creative commons licence. A downloadable SCORM learning object will be added to the website in the next couple of weeks for organisations to download and use in their VLE’s and websites. All we ask is that you register your details before you download the materials so that we can contact you if they are updated in the future.
- On the website you can find fullreports, a beginners guide to OER, and the Risk-Kit. You can find information about OER2, PORSCHE and ACTOR projects, and find an increasing number of case studies. You’ll also find some information about PublishOER and Consent Commons there.