Advocacy Essentials
At its simplest, advocacy is acting in the interests of other people. As a patient advocate or member of a neuroendocrine cancer patient organisation, you take action in the interest of those affected by or at risk of neuroendocrine cancers. There are many ways to perform this work.
Here are just a few examples:
- Raising awareness through campaigns to make sure others understand neuroendocrine cancers and the challenges of those affected;
- Attending meetings where you can put forward the experiences and perspectives of people with neuroendocrine cancers;
- Collecting evidence that shows the gaps in care and the challenges faced by those seeking an accurate diagnosis, and using this evidence to support your campaigns and in your meetings and discussions.
When these kinds of activities are targeting those people who design healthcare systems, or decide on the availability of treatment and care options, then this is ‘health policy’ advocacy work.
However, most stakeholders are professionals in the field, and you can feel overwhelmed if you are expected to understand the workings of the healthcare system and the clinical data. In fact, it is not necessary to know all these details to engage in these activities. As a patient advocate or patient organisation, your key asset is understanding and reflecting the patient needs, perspectives and the real-life issues that people with neuroendocrine cancers face. A patient advocate or patient organisation is not expected to be a clinical expert. You are a patient expert and can convey information and details that no other stakeholder has.
What do you really need to know to be effective?
- Who makes decisions on healthcare in your country?
- Nationally
- In a local region
- At a single hospital/clinic
- How can you contact these people?
- Publicly available email addresses?
- Direct messages via social media platforms?
- Through other people who are already working with them?
- How do you introduce yourself and/or your organisation?
As a patient organisation, the clearest way of expressing your role and purpose is through clearly articulated statements on your Mission, Vision, Values and Goals.
How do we make a change?
This toolkit focuses on local and national changes which you can visualise in the pyramid as the first three base levels.
