An ethic-of-empowerment: e-health and healthy ageing Anita Melander Wikman, PhD, Ass.professor Luleå University of Technology

What methodolgy can be used to create an-ethic-of-empowerment?

Research questions for an ethic-of-empowerment What methodology can be used to develop products and services which:  help facilitate a more active role in health care and rehabilitation  sustain autonomous living  enable older people to become fully active participants in healthcare and rehabilitation programs All in cooperation with relevant organisations.

Research context EIC- E-health and Innovation Centre, LTU Development and research for Innovative Systems and Services that enable people to remain at home longer while ensuring a high quality of life.

( ) Project 1.Partners 2. Research persons 3. Findings 4. Research design and methodology

Research - Healthcare & welfare, ICT and Market Luleå University of Technology Norwegian Centre of Telemedicine University of Ulster, Northern Ireland Fieldtrial Pensioners organizations Municipality of Boden and Luleå County Council of Norrbotten Municipality of Tromsö Southern Health & Care Trust, Ulster Blue Tree Services McElwaine SMART Technologies Swarm teams Tieto Arctic Group IntelliWork Nelilab

Market End-User Need Technology Participatory and Appreciative Action and Reflection Research (PAAR) FormIT Living Lab Older persons and Health and Welfare staff

Research persons in the Swedish part of 3 older persons with experience of e- health projects 3 older persons from pensioners org. 7 older persons with functional limitations from e.g. stroke, heart disease, Parkinson. Anita Melander Wikman; Alec 2012

The services A mobile phone with three functionalities; 1.Safety alarm with locator and fall sensor 2.Prescribed care functionality 3.A functionality to stimulate social interaction and social networking

Findings from the old persons’ perspective Safety and freedom of mobility was the most important need. They learned more about their own health The system was motivational in being active The communication and interaction with PT and GP was more easy

The design process was collaborative with space, voice and participation Motivational factors: The older persons had an interest to better understand the technologies of today and tomorrow They wanted to contribute as best they could for the god of older people in general.

Methodology A Model for Reflective Participatory Design (RPD) Participatory and Appreciative Action Research (PAAR) FormIT Forthcoming publication: Bergvall-Kåreborn, B., Melander Wikman, A. & Ghaye, G. (2012) The importance of space, participation and voice when designing systems with users. Health Informatics Journal

Participatory and Appreciative Reflection and Action Understand …..the best of what is Imagine ….. what can be Create …what will be PAAR's- 3 goals

FormIT - Three design cycles Exploring needs and identifying dreams and visions together with older persons Concept and prototype design Assessment of the system in use and evaluation of the whole process Anita Melander Wikman; Alec 2012

A model for reflective participatory design (the RPD model) Bergvall Kåreborn, Melander Wikman & Ghaye Anita Melander Wikman; Alec 2012

Reflective Participatory Design (RPD) The older participants were real participants in almost all work-packages (not management) Participants in application writing Access to information via Needfinding – conceptbuilding – system requirements - prototyp testing

Conclusion ‘Opening up’, ‘widening’, or ‘broadening’ opportunities for elderly people to authentically engage in decisions about their health and care. Sometimes space for manoeuvre are limited by project deadlines and budgetary controls. An image of people coming together, to discuss, plan, question, reflect and make decisions is important

Participation The intention is to go beyond the practice of consultation Participation is to be more than the taking up of invitations to ‘be involved’ Participation has to be learned, especially when (or if) those involved are used to being excluded.

CREATING ETHICAL SPACES FOR OLDER PEOPLE Explaining the ‘rules of the game’ Positioning older people in project design forums Agreeing relationships and responsibilities Physical space – where to meet The power of the words we use