“It is wrong to write about people without living at least a little of what they are living through.” Ryszard Kapuściński, Polish journalist and writer (1932-2007)

“First that patients must be at the heart of everything we do, not just as beneficiaries of care but as participants in shared decision making. As patients there should be no decision about us without us.”  Andrew Lansley, Secretary of State for Health, United Kingdom (National Voices: 8/6/2010)

I was recently invited to speak at the first national meeting of OVACARE (www.ovacare.org) – an advocacy group to educate, empower and improve the care of women with ovarian cancer in Ireland. The group is modelled on similar advocacy groups in the UK, US and Australia, and will, I feel, have significant impact on ovarian cancer care in Ireland. 

This group joins other advocacy groups in the landscape of cancer medicine in Ireland and marks an important evolution in cancer care where the patient is increasingly becoming the focus of healthcare organisation. This is a welcome development – empowerment will improve care and help identify gaps in service provision. 

A significant part of the OVACARE meeting related to research, discussing developments in laboratory-based work funded by the Emer Casey Foundation (www.emercaseyfoundation.org). In addition to funding research, however, these advocacy groups serve important roles in other countries in clinical trial development and in the enrolment and recruitment of patients to clinical trials. This is an area where impact could be significant. 

A recent study in Germany demonstrated the improved outcome for patients with ovarian cancer who were treated in hospitals with clinical trial participation. In the United Kingdom, the organisation INVOLVE (www.invo.org.uk) is assisting in clinical trial development and plans are underway to incorporate patient advocates into the All Ireland Co-operative Oncology Research Group (www.icorg.ie). At present, 5% of patients with cancer in Ireland are enrolled in clinical trials. The aim in the next three years is to double this figure – the involvement of patients and advocacy groups will be pivotal to achieving this goal.