In relation to health and wellness, the role of people with Parkinson’s can be usefully understood in terms of ‘stakeholder’ language. Being a stakeholder describes a group whose participation is indispensable to the ongoing existence of an enterprise, activity or function. In relation to health and wellness it is clear that the individual and/or whānau inhabit this space in a way that others do not. As people with Parkinson’s, ownership of our condition rests primarily with this group. How well we do this impacts directly on the efficacy of the health services we receive.
The application of transactional thinking and practice to health has marginalised the role of the person with Parkinson’s as primary stakeholder. The more recent development of relational thinking in health service provision, while positive, does not necessarily free the primary stakeholder to play their role as the subject not the object of support within the health system. However relational thinking and practice offers a better opportunity for stakeholder development for us into the future than any other approach.
Relational thinking in health immediately raises the question of the identity of the parties. In Aotearoa New Zealand this has a community dimension that needs to be engaged. Health is necessarily a very specific personal matter and the onset and progression of Parkinson’s is a good example of this. In looking at the question about what to do to support people with Parkinson’s I believe it will be important to engage, on a regional and even sub-regional basis, ‘people with Parkinson’s’ to get close to our aspirations for health and wellbeing. This is more about hopes than needs. As culture powerfully shapes identity, it will involve looking at issues of cultural difference and preference as well as the more typical demographics that cut through most communities e.g. age and gender.
The method for doing this essentially involves willing primary stakeholders having a strategic conversation together across a wide range of aspirations for our health and wellness. Through listening and understanding we can build a composite picture that connects everyone’s story enabling it to be understood in a way that does justice to our history and direction as a society.
The first step therefore is to ask our Auckland members if they are willing to come together to think about a stakeholder role and what it might mean for them.
The second step is to prepare a process to enable those willing to explore their hopes and aspirations for health and wellbeing as individuals and as whānau
The third step is to analyse the notes of the process and develop a suitable framework for the people of Auckland that will enable priorities to be understood strategically across the region.
The fourth step is to communicate the analysis back to the original individuals and groups participating to seek endorsement of strategic priorities for Auckland or to identify further development needed.
The fifth step is for the Core group to develop plans for working with the professional staff of Parkinson’s Auckland other health professionals and Parkinson’s New Zealand.
 The underlying concept of ‘stakeholder’ is described in Stockholders and Stakeholders: A new perspective on Corporate Governance. Freeman, R. Edward; Reed, David L. California Management Review, Spring83, Vol. 25 Issue 3, p88-106
 Described in the work of the Society for Participatory Medicine http://participatorymedicine.org
Author: Tony Spelman
Dated: 04 July 2014