A second harvest of the past ten years
Following our ten-year retrospective at Easter, this time we’re digging a bit deeper to select a number of the activities we engaged in between 2014 and 2021. Including: – Patient Empowerment & Health Literacy
– Self-Management of Chronic Conditions
– Networking and collaborating with other NGOs
2014: EHFF establishing its European voice
EHFF had been one of many organisations engaged in the European Innovation Platform for Active and Healthy Ageing (the EIP for short). In the summer of 2014, the Greek Presidency held an eForum in Athens and we did a parallel session there entitled “expert forum on community empowerment and technology: implementing the new paradigm”. Co-chaired by Brian O’Connor of ECHAlliance (https://www.linkedin.com/company/echalliance ) and Prof. Nick Guldemond, then at the University Medical Centre, Utrecht. There were eight presentations and a recorded group discussion followed, which included input from Commission representatives, Prof George Crooks, then CEO of NHS24 Scotland, and others. A summary of presentations and the draft report can be accessed from our Archive here: https://ehff.eu/presentations-at-parallel-session-on-eip-in-athens/
European projects 2014 – 2018
2014-2018: During these five years EHFF was a part of organising consortia that successfully bid for three successive tenders in inter-related subjects:
Empowering patients in the management of chronic diseases was a ten-month project which had an important task in terms of defining patient empowerment more clearly at a policy level as well as identifying clusters of good practices and facilitators and barriers to implementation across Europe (data from 26 countries). A summary of activity can be found on our website Archive, including a presentation we made on behalf of the Consortium at the Commission WG on patient safety and quality: https://ehff.eu/the-empathie-project-empowering-patients-in-the-management-of-chronic-diseases/
The project took longer than expected because sadly, the main coordinator CBO, went into administration after a year, and we had to go through a process of negotiation with the Commission to install DCHE, the Danish Committee for Health Education, in their place. Essentially it involved creating a panel of experts to advise on strategies to encourage citizens to manage minor conditions without making extra demands on healthcare services. Five minor conditions were chosen to illustrate the kinds of supports that could enable this. The final conference in 2017 is reported here: https://ehff.eu/pisce-project-final-conference-brussels-mar-17th/ Unfortunately, the project website no longer exists, but an eBook covering the whole project is available on request.
PROSTEP (2016-2018) Promoting Self-Management for Chronic Diseases in Europe. This tender was led by EPF, the European Patients Forum. One of the PROSTEP work packages led by FAD (Fundación Avedis Donabedian) on evidence of effectiveness of self-management tools was the basis for their subsequent major Horizon 2020 project COMPAR-EU. EHFF led an interesting work package on innovation, defining innovation and then reviewing current projects to see whether any met the criteria for transformational change. The final report of the project is reported here: https://ehff.eu/prostep-the-final-report-is-now-available/
Engagement in Commission Joint Actions
Joint Actions: are extremely costly massive undertakings with, if possible, buy-in from most Member States. One problem for us as an NGO is that, unlike 10 years ago, NGOs get shut out, because the partners have to contribute to funding. Nevertheless, we can still give input by being classed as Collaborating Partners or join as consultants. Here are three JAs, on Workforce Planning and Forecasting, which we joined in 2013-2017, on chronic diseases, CHRODIS: 2014-2017 and its follow-on, CHRODIS PLUS 2017-2020 (for descriptions of the latter two see: http://chrodis.eu/ . In the first, we were lucky to be hired as consultants by the UK Centre for Workforce Intelligence, where we were in WP6, which was on horizon scanning.
The link here is to our report on the final conference in Mons, Belgium in 2017, which has presentations summarising key outputs of the JA:
The two chronic disease JAs can be accessed as above. EHFF contributed to the first via collaboration with EPF in presenting patient empowerment and health literacy as important elements in managing chronic disease. In CHRODIS PLUS we shared in field work in WP7 by provided experts to visit, with the lead partners Jelka Zaletel from the Slovenian Health Ministry and Marina Maggini from the Istituto Superiore di Sanita, the five pilot sites for trialing the quality measures designed in the previous JA and provided a critical analysis of their outcomes.
However, we haven’t been just content to piggy-back on European Commission projects.
Our first venture was in 2016/7 when, with a small grant from the Robert Bosch Stiftung, we hosted a two half days meeting in Berlin for roughly 30 diverse stakeholders on the topic of ‘Developing an expert consensus on barriers to co-creation in eHealth’.
The link includes a summary of the report https://ehff.eu/ehff-and-digital-a-position-statement/ In essence this was a review with knowledgeable stakeholders from all sides, patients, academics, designers, business people and policy/government representatives of what were both good practices but also common failures in regard to early engagement of end users (both patients but also often professionals) in new health design and development, to ensure that user needs dominated the direction of these processes. By chance, we had two representatives from the Estonian Health Ministry, the year before they held the European Presidency during which they hosted ECHAlliance’s launch of their project Digital Health Society (in which we are one of very many partners).
Forging Relationships & Alliances
Although the bulk of our more recent work has been outside the ‘Brussels bubble’ we’ve kept a link through membership of several NGO alliances such as the EU Health Coalition https://www.euhealthcoalition.eu/ and Reimagine Europa https://re-imagine.eu/ . Our most productive relationship has been with All Policies for a Healthy Europe (AP4HE) where we are one of nearly 20 knowledge partners since 2020. In 2021 EHFF having chaired their Economy working group, co-wrote their policy paper on the wellbeing economy, which was our introduction to this field and led to our current engagement with WEAll, the Wellbeing Economy Alliance, which is described in our previous Newsletter.
Finally, during 2021 we also curated, in partnership with Lars Munter of Nordic Health 2030 and Jim Garrison of Ubiquity University, 15 webinars on current issues in European health for Jim’s Humanity Rising series. This involved inviting 40-50 experts in total to discussions and presentations and as this is such a rich piece of work, we’ll describe it in more detail in a subsequent post.
Conclusion: This excursion through our Archives gives you a flavour of the breadth of activity that has taken place between the early and latest engagements we described in the Easter 10-year retrospective Newsletter at the end of April. I’m off to Tipperary shortly to engage in our All-Ireland WEAll hub’s second ‘Deep Dive’ for its Cultural Creatives’ project, see https://weall.org/hub/ireland . We’re also looking into the possibility of putting together a consortium for one of the recent Commission EU4Health calls for proposals, on mental health. Watch this space but do hope you get a relaxing break sometime during the summer.
Director European Health Futures Forum 28.06.23