Working With The Stakeholder Group

Existing evidence shows that integrating palliative care and cancer care could improve quality of life for patients and their caregivers, at the same time as reducing the costs to the health services.  This evidence has motivated us to carry out the current research project – Integrating Palliative Care and Oncology (IPCO) – so that this potential can be realised in practice. We are aiming to understand how and why integrated palliative care works in different healthcare settings and for different groups of people, and to provide guidance for the best implementation and delivery of integrated care.

We will develop our findings by bringing together relevant evidence into what is known as a ‘programme theory’, while working closely with a group of stakeholders to make sure that our conclusions remain appropriate and useful to the real world. This blog explains a little more about our ways of working with the stakeholders.

Our stakeholder group is varied, including healthcare professionals involved in palliative care, healthcare professionals involved in cancer management, national and international research clinicians in palliative care and cancer, community groups, and policy professionals. There are a range of disciplines, such as nurses, medics, physiotherapists, and social workers. We are lucky to have four patient and public representatives who share their own stories of cancer care, with and without integrated palliative care. One of these individuals is a co-applicant on this NIHR funded project, and member of the research team. 

Although we have a number of different perspectives involved in the stakeholder group, there will always be practical limits on how many people can be included. We acknowledge that this is a limitation, and we may still have blind spots as a result.

We will meet with the stakeholders five times during the project. In addition, we also meet with our four patient and public representatives in a separate meeting beforehand. These ‘pre-meetings’ are helpful in shaping what we, as researchers, bring to the larger group. Figure 1 shows an overview of the aims and timeline for each of these five meetings.

Figure 1: Schedule of stakeholder group meetings

At each meeting we will share and discuss our emerging findings with the stakeholders, so they help shape the review process. All stakeholders also have the opportunity to comment between meetings and to feedback their reflections on meeting notes. As we learn more about the integration of palliative care with oncology, our stakeholders can help us better understand which outcomes matter most to patients, carers, professionals, and policy-makers – thus allowing us to focus on these. This gives us an opportunity to maintain a feasible scope for the project while prioritising those aspects that are most important, or most likely to be impactful in healthcare settings.

Our stakeholders will also help us to identify the implications of our findings for practice and for policy. They will be involved in designing our outputs, including user-friendly guides on what works to bring about the desired outcomes of integrated palliative care. Because the stakeholders have been involved throughout the project, we will also benefit from their help in sharing these outputs with local, national, and international audiences. 

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