Deliverables : Patients Participate!

Patients Participate! position paper
A report that set the scene for the workshop by describing the project aims and background, issues and benefits in citizen science and questions that the project wanted to address.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/09/PatientsParticipatePositionPaper.pdf

Citizen science scenarios
Five scenarios to suggest potential implementations of crowd-sourced lay summaries, illustrating issues and questions for patients, academics, evaluation, usability and functionality.
http://blogs.ukoln.ac.uk/patientsparticipate/2011/08/08/scenarios-for-writing-lay-summaries/

Workshop report
A report on the workshop held on 17th June 2011, summarising the outcome and recommendations from the workshop.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/10/PP-Workshop-Report-final.pdf

Literature review
A survey of human factors and usability in citizen science projects reported in the literature.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2012/09/PatientsParticipate-literature-review-v1.2.pdf

Functionality assessment
A description of the features of citizen science platforms.
http://blogs.ukoln.ac.uk/patientsparticipate/2012/10/18/citizen-science-platforms/

Case studies
A document describing 6 examples of organisations currently producing lay summaries relating to biomedical research.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/10/Case-study-report-Final.pdf

Report on guidelines for writing lay summaries.
A report on a review of current advice on writing lay summaries and a feedback exercise with academics. [Internal]

Briefing paper on citizen science
An awareness-level briefing paper describing citizen science projects, potential benefits for academics and the public, and open issues, published through the Digital Curation Centre.
http://www.dcc.ac.uk/resources/briefing-papers/citizen-science/

How-To guide for writing lay summaries
A working-level guide for academics on producing lay summaries.
http://www.dcc.ac.uk/resources/how-guides/write-lay-summary

Survey of AMRC member charities.
A report on the views and practice of charities on lay summary provision.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2012/10/PP-Charities-perspectives.pdf

Patients participate – involving patients and the public in talking about medical research.
A guide for patients with pointers to other resources.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2012/10/Involving-Patients.pdf

Survey of AMRC members’ activities (lay summaries) Summary Table
A graphical summary of the current activities of the charities (members of AMRC) around lay summaries: who writes about medical research in lay terms, what are the processes, what guidance is available.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2012/10/PP-AMRC-members-writing-for-lay-audiences-summary-table.pdf

Patients Participate! report
General summary of the project, presented at the Talk Science event.
http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/09/WebPatientsParticipateSummaryReport.pdf

Talk Science event
Launch of the Patients Participate! report
http://www.bl.uk/reshelp/experthelp/science/talkscience/previousevents/TalkScience14/index.html
Press release
http://pressandpolicy.bl.uk/Press-Releases/Patients-Participate-Bridging-the-gap-between-information-access-and-understanding-535.aspx
Youtube video of the TalkScience event

Patients Participate!

Deliverables

Elsewhere