|Marj Allen, Chair of the South Island Cancer Consumer Group|
Marj Allen describes herself as a thriving cancer patient who has regular experiences within the health system. She is also Chair of the South Island Cancer Consumer Group. Marj is passionate about the role of consumers in health services and believes they bring a unique perspective to the decision-making table. In this month’s guest editorial, Marj shares her experience as a consumer representative…
I have been a cancer consumer for over 14 years. I guess you would call me a thriving cancer patient whom has regular experiences within the health system. Living rurally for a large amount of this time has also shown me a different perspective from city living, where the health system is closer. I decided I wanted to give back to the system and I had completed the Cancer Voices training many years ago.
I’m on many groups both nationally and locally. These include the consumer panel for the Health Quality and Safety Commission; the South Island Palliative Care Workstream; Cancer Consumer New Zealand; the Southern Cancer Network Steering Group; ACP Planning Advisory Group; and a patient experience advisory group. I am passionate about the role of consumers in health services and as stated in the New Zealand Health Strategy (Ministry of Health, 2016) ‘a people-powered system will involve people not only as users of health services but also as partners in health care. It will support and equip all New Zealanders to be informed about and involved in their own health.’
I’m a strong believer in quality data, empowering our patients and addressing inequities right from the coal face. There are some exciting initiatives currently taking place. For example, the national electronic health record is going to be great for consumers and we need to contribute to this being as consumer-centred as possible. There are issues for us in the South Island that need to be further explored and resolved to help drive change and to improve cancer care for the people of the South Island. For example, access to services for people living rurally and the burden of travel are often raised as issues for patients and families in the South Island.
It’s a privilege to be the Chair of the South Island Cancer Consumer Group. Our team bring diverse experiences and insights and are open to working with groups across the South Island to give the consumer perspective around cancer related areas, and to support improvements in care. We are aware that everyone is patient-centred, however, having a consumer around the table brings that to life and offers a broader perspective to the development of services and decision making.
I strongly endorse and support the participation of consumers on local cancer networks. It provides a really good link to cancer-related activities in an area and contributes to local improvement work. They can speak for the interests of other local cancer consumers and where required can feed into regional and national work with the support of their local network. It offers an opportunity to build strong partnerships for consumers. I encourage you all to help me to take this journey forward and I look forward to hearing your input.