National reports on EPaCCS
Public Health England, National End of Life Care Intelligence Network. Electronic Palliative Care Co-ordination Systems (EPaCCS) National Data Project. A study to assess the challenges and opportunities associated with collating information from different EPaCCS. Ver 1.0. Oct 2016. Also at: http://www.endoflifecare-intelligence.org.uk/resources/publications/epaccs_nat_data_proj
Whole Systems Partnership for Sustainable Improvement, NHS England. Independent Evaluation of Palliative Care Co-ordination Systems (EPaCCS) in England. Final report. Mar 2016.
Whole Systems Partnership for NHS Improving Quality. Economic evaluation of the electronic palliative care coordination system early implementer sites. Feb 2013.
Ipsos MORI. End of life locality registers evaluation. Jul 2011.
Project articles and other teams’ articles on EPaCCS
Something’s awry (again) in the debate on patient data sharing. (2018)
Petrova M, Barclay M, Barclay S S and Barclay S (2017) “Between “the best way to deliver patient care” and “chaos and low clinical value”: General Practitioners’ and Practice Managers’ views on data sharing”. International Journal of Medical Informatics, 104:74-83, https://doi.org/10.1016/j.ijmedinf.2017.05.009
Petrova M, Riley J, Abel J and Barclay S. “Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from”. BMJ Supportive & Palliative Care. Online first: 16 Sep 16.
Allsop MJ, Kite S, McDermott S, et al. “Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation”. Palliative Medicine. Online first: 9 August 2016.
Wye L, Lasseter G, Simmonds B, et al. “Electronic palliative care coordinating systems (EPaCCS) may not facilitate home deaths: a mixed methods evaluation of end of life care in two English counties”. Journal of Research in Nursing 2016; 21(2): 96-107.
Blogs on the “Prepared to Share?” study
“Would you share or would you listen?” – Jun 2017
“As I Lay Dying”– Apr 2015