Here is our CEmPaC Story…
Since the publication of the Chronic Illness Model by Ed Wagner in 1996 there had been an increased interest in how people living with one or more chronic conditions could be supported in and enabled to manage their own health condition. There was a strong policy direction from the NHS in the UK with patient participation/patient engagement as synonyms for empowerment and the introduction of the concept “The Expert Patient”
This was formalised in the 1999 government paper “saving lives, our healthier nation” which asked the Chief Medical Officer- Sir Liam Donaldson to set up a Task Force to design the new Expert Patients Programme. This resulted in the national roll out accross the NHS of the Stanford Chronic Disease Self Management Programme (CDSMP) previously championed by the voluntary sector. During its time as a NHS programme over 100,000 people attended courses with many 100s of volunteers trained to deliver them. Both Prof Angela Coulter, an esteemed academic and Sir Harry Cayton (first NHS Czar for citizen and patient participation) from the early 2000s were important figures supporting this policy direction. In Denmark, Charan Nelander of the Danish Committee for Health Education pioneered introduction of the Stanford Model (CDSMP) in Denmark along with growing interest in the programme in Switzerland led by the Careum foundation .
Thanks to support from Prof Ilona Kickbusch (who had previously worked for WHO and promoted self-care for nearly 20 years) and her Swiss based Careum Foundation, in 2012 under the auspices of the Danish Presidency, the WHO Regional Office for Europe coordinated the first ever European conference on patient empowerment with the Danish Ministry of Health, the National Board of Health, DCHE, the Careum Foundation and the NHS Expert Patient Programme, England.
Although it had Careum as its godparent, after 2015 the European network on Patient Empowerment (ENOPE) was constituted as a separate entity, with Board members including representatives from Careum, EPF (the European Patients Forum), DCHE, EHFF and Chaired by Jim Phillips, formerly lead of the NHS Expert Patient Programme. Later that year, ENOPE was incorporated under the umbrella of EHFF to give it legal status and that year Jim Phillips and David Somekh also both sat on the programme board for the EPF’s year-long campaign on patient empowerment (funded by the Robert Bosch Foundation: RBS). This culminated in an international conference in Brussels in 2016 and the publication of a ten point Patient’s Charter for Empowerment Here
Between 2013 and 2016 EPF, EHFF and DCHE with other consortium members undertook European Commission funded projects on related topics:
The EMPATHiE project: Empowering patients in the management of chronic diseases: Final report
The PiSCE project: promotion of self-care systems in the European Union: PiSCE Final report
Presentations from the ENOPE conferences can be found here.
The EPF conference report and Patient’s Charter can be found here
On the basis of all of this previous work, in 2017 RBS agreed to fund a three year project to set up a European Resource Centre on Patient Empowerment, the funding to be managed by EHFF, and at the beginning of 2018 the Centre for Empowering Patients and Communities – CEmPaC- was launched, with Jim Phillips appointed as acting Director. CEmPaC’s Advisory Board includes representatives from a number of the original ENOPE founder members, together with other distinguished experts in this field.
