Consent, Trust and Enablement in a Digital World

In the framework of the ALEC 2017 AER organised a mutual learning workshop on social capital for integrated care. Dr. Michael Rigby, Emeritus Professor of Health Information Strategy at Keele University (UK) and Deputy Principal Investigator for the MOCHA H2020 project led by the Imperial College of London on “The Informal and Formal Virtual Care Team – Consent, Trust and Enablement in a Digital World ”

We focused on stakeholder engagement, specifically on the largely untapped potential of social capital in integrated care systems. While we at least theoretically know how to involve the professionals, it is, for various technical, ethical or other reasons, difficult to enable more people around the patient to get engaged as well. Technology is only part of the answer, we need to revitalise democracy through the engagement of citizens. …

Building social capital is revitalising democracy

Currently, all AER actions are organised in the framework of the 2016-2017 focus “revitalising democracy”. The ALEC 2017 AER workshop is no exception.

Indeed just as quality care systems need the sustained participation of the people around the patient, society at large needs the constant participation of larger parts of society. In healthcare this means to go further than the next of kin and children, and look at all the other people who at some point are in contact with the patient and are eager to support them (think of the role of grandchildren, . This relates clearly with the AER declaration (r)e-inventing democracy which states

Whereas: tapping into the human capital both inside and outside institutions via IT applications could boost innovation, increase engagement, save time and financial resources;

Whereas: In a democracy the role of citizens is central and their participation is the corner stone of legitimacy; (…)

We, the Assembly of European Regions:

(…)

2. recognise the need for multi-stakeholder approaches for economic, social and politicalparticipation to face societal challenges;

3. encourage the public, private and non-governmental actors to incite citizen-led initiatives;

4. underline the importance of design in public services to provide citizens with opportunities to

contribute to the public good with their talent; (…)

Keywords here are “human capital” “via IT” “multi-stakeholder”

Team work to look at social capital

Participants to the AER workshop organised in teams, shared their experiences and objectives. They also committed to help each others to achieve their mutual goals in order for the workshop to have a multiplier effect on the social capital they are building during the #ALEC2017 event.

The workshop provided both scientific expertise on the topic and a gamified experience based on the methods developed and available on the QI4U eLearning platform from the Collaboration for Leadership in Applied Health Research and Care Northwest London.

Participants looked at the stakes and mechanisms in the engagement of the people around the patient. The engagement of a broader informal care team is to be envisaged in a wider process of quality improvement. Issues discussed included authorisation, roles, recruitement, communication with and recognition of the wider informal care team.