Research paper gives valuable insights into co-design with patients and carers

Illustration in shades of blue of two women sitting on a sofa. Their hands are clasped together in a supportive way.

The European Journal of Cancer Care has published a paper (2 February) which highlights the contribution of patients and carers in developing the Your cancer pathway support guide. The North Central London Cancer Alliance launched the guide last year to support people going through diagnosis, treatment and follow up care.

The paper, led by Dr Yasemin Hirst, Senior Research Fellow, Applied Health Research Hub, University of Central Lancashire, explains how the guide was developed involving nine people with lived experience of cancer, and healthcare professionals, who, over many months, contributed to co-designing through workshops and written and verbal feedback. They said that the guide potentially offered important information to patients and carers looking for specific information about cancer investigations, diagnosis and treatment. Additional patients and carers also participated in the testing stage of the guide.

Going through cancer diagnosis tests is a stressful process. If results confirm a cancer diagnosis, a person can experience uncertainty and anxiety as they go through treatment and after care. The Your cancer pathway support guide, which can be used online or printed out, provides example questions for individuals to think about asking healthcare professionals at all stages of their diagnosis and treatment. It provides answers to these questions or signposting to information and organisations that could help them.

Having the right information and support at the right time for them, means that individuals will have the confidence to help make shared decisions about their treatment and care, as well as access to emotional and practical support.

Sharon Cavanagh, Programme Lead for Personalised Cancer Care at the North Central London Cancer Alliance, said: “Developing Your cancer pathway support guide has been a significant project for us. It would not have been possible without the partnership of patients and carers to ensure the guide achieved our aims. Their input, questioning and challenging in the workshops and beyond is what has made guide a helpful useable product which we are now encouraging cancer teams to introduce to their patients.”

Comments from patient co-designers:

Michael Anderson: “Working on the guide really gave me a chance to influence its look, feel and content from a patient perspective.  What would I want to see, how would I use it and what would I find helpful? Throughout the process my voice was heard, and I was treated as valued and equal member of the project team.”

Denis O’Connor: “As a group of patients and carers who have had direct experience of cancer, each of us looked back to identify how our individual stories can be used to help future patients and carers. Collectively, we identified the questions that we wished we had asked at the time, and we have attempted to provide some answers and signposts for further information. We hope that the Your Cancer Pathway Support Guide will provide very practical help as people negotiate a very difficult and stressful time of their lives.”

Jane Aylott: “When you get diagnosed with cancer it changes your world. And your view of the world. A tool to support you as you try and negotiate your cancer, where to go, who to ask, support and advice is long overdue. It is great that actual patients have been listened to and were front and centre in the development of this tool.”

Stewart Block: “Travelling along the cancer patient pathway can be a scary and frightening experience. This guide shows that you are not alone.”

Read the paper in the European Journal of Cancer Care

More on Your cancer pathway support guide

Information on the guide for healthcare professionals

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