Patient consent and considerations for health and medical OER

open educational resources – training

SCOOTEROER76b_Jacob_Escott_Artwork2_Med

Authors:                                Level:

Dr Vivien Rolfe                             OER community

OER Features:

Guide to creating health and medical OER.

OER Description:

As part of the UKOER Programme (2009-2012) there was a wealth of important information produced, and in the context of creating health OER, the Medev Subject Centre team worked on some outstanding projects. I hope over the next few weeks that many of the OERs produced by this team can be hosted on this blog, as the original URLs to the subject centre pages are no longer valid. However, here are some resources to get you started in considering some of the additional checks that need to be made when creating OER involving health and medical information, and that might require cooperation from patients and families.

The team comprised Suzanne Hardy, Megan Quentin-Baxter and Gillian Brown who worked for the subject centre and were based at the University of Newcastle. You can hear them talking about the key projects on YouTube.

OER Projects

OOER Organising OERs – (Pilot Phase)
PORSHA Pathways to Open Resource Sharing (Phase 2)
PUBLISH OER (Phase 3)

During these projects when the team were working in the creation of health OERs, they observed challenges in working across NHS and academic settings, not simply in terms of dual-location of students, staff often with more than one job role, but the simple sharing of resources across separate IT networks was a problem. The team also started thinking about the issue of consent. The involvement of patients in clinical education was well established, as it is today, but the notion of recording and releasing patient materials openly gave rise to new questions. Any resource would have the issues of IPR and copyright to consider, but additional checks would have to ensure compliance with Schedule 2 of the Data Protection Act where consent is given by the ‘data subject’ to the processing of that data.

There are other scenarios that require consideration relating to ethical questions. Patients are protected by the Data Protection Act, but what when they are no longer patients? What if they die? What about cadaveric materials?

Here is some further reading on the subject.

HEA Medev S Hardy_Medical OER_2009 (PPT slides from a talk by Suzanne Hardy)

OER IPR Support Kit and Web2Rights LTD (Support kits for IPR – diagrams, charts and videos)

GMC guidance on audio and visual of patients (General Medical Council guidance)

Medev ‘Risk Kit’ – risks and consent. (Hopefully to be located here soon).

 

The reuse of OER in health and life sciences: a check-up

Using health OER (Download PDF guide on “the reuse of OER in health and life sciences”)

By Vivien Rolfe, Jacqui Williams and Richard Windle. This guide talks through some of the author experiences of creating and using health OER. In the UK alone, health is one of the largest subject sectors, with one fifth of students studying Medicine, Biological and Veterinary Sciences. A further one in ten study Nursing, Midwifery, Pharmacy and biomedical sciences. THE SCOPE FOR SHARING TEACHING MATERIALS IS VAST BUT YET TO BE REALISED.

The recommendations from this work were to:

  1. develop partnerships and communities around repositories of resources for health OER to be more widely adopted.
  2. to take the OER where the ‘real world’ users are likely to be interested in them. There is a barrier to the academic and technical language of universities. “We must work with approaches and routes of access that these communities are conversant with and that promote confidence”.

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Researching OER impact

open educational resources – training

Sickle Cell Disease

Authors:                                Level:

Dr Vivien Rolfe                             OER community

OER Features:

Researching OER!

OER Description:

It is lovely to see that in 2015, three years after the end of the HEFCE-funded UKOER programme, open education is becoming mainstream in education and with a number of high-impact OER projects in existence. The community are developing OERs, open courses and influencing institutional policy. A number of researchers have attempted to define and evaluate the impact of these OER projects, and this information is providing vital messages to reach and influence further corners of the education sector. This blog post will provide links to OER research tools, including openly licensed surveys and questionnaires that are available for reuse!

Open University OER Research Hub
http://oerresearchhub.org

The Open University’s ‘OER Research Hub’ team are leading the way in harvesting existing OER studies onto a global impact map. They have also defined 11 impact hypotheses for researchers to consider when evaluating the benefits of OER activities and projects. The OER Research Hub web pages also contain useful information on ethics for the increasing number of people now researching ‘openly’ on the web, outside he jurisdiction of any institution.

What is research and what is evaluation?

In terms of approaches required, if someone is setting out to explore the benefits or impact of their work, it is important to distinguish between evaluation and research. One grows from the other, and a simple evaluation study can provide the pilot data or starting point for a more robust programme of study. The most important point to make is that within universities, there may be a lack of clarity as to whether ethical approval is required. The danger for someone producing exciting data from a small evaluation is they may then wish to publish it but not have the consent to do so in place.

Evaluation

  • Testing the benefits of an ‘intervention’ (e.g. control versus test group; pre-intervention versus post-intervention comparison).
  • Formative evaluation will improve classroom practice, or the progress of a project.
  • Limited in the number of research methods employed, e.g. interviews or a questionnaire.
  • May inform internal changes.
  • May fall into the trap of being externally published without ethical consideration.

Research

  • Research will test hypotheses and theories.
  • May employ a number of methods to cross-reference and validate results.
  • Be more extensive and generalisable to a wider population.
  • Externally published / presented at conference.
  • Will require ethical approval.

Openly licensed survey instruments

The ‘Reusable Learning Object Centre for Excellence in Teaching and Learning’ (RLO CETL) has a wealth of superb materials, from templates for preparing high quality multimedia resources, to checklists and ideas for evaluation and research. The following document includes focus-group, interview and questionnaire questions that can be reused and adapted.

RLO CETL Evaluation Toolkit_CCBYNCSA_2005 (questionnaire and interview questions)

OER Community of User Perception Survey (questionnaire questions)

OER Open Learner User Survey (questionnaire questions)

OER Staff Awareness and Perception Survey (questionnaire questions)

OER University Student Awarenss and Use Survey (questionnaire questions)

 

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Getting started with IPR and open licenses

open educational resources – training

Web2Rights

Web2Rights Graphic

Authors:                                Level:

Dr Vivien Rolfe                             OER community

OER Features:

Introduction to IPR and Licensing

OER Description:

The intention of this blog post is to forward readers on to the Web2Rights Ltd who have a wealth of information, tool kits and video resources to support the open education community. They support those wishing to create content, or those who wish to understand copyright and licensing.

 

YouTube Channel – OERIPRSupport

Web2Rights Website

 

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