L to R. Elaine Quinn, Barbara Hughes, Amanda Mc Cann (PVCR), Deirdre Murphy, Claire Kilty, Robert O Connor

Building Connections between Cancer Patients and Researchers

The Patient Voice in Cancer Research (PVCR) held another very successful and productive workshop on Wednesday 9 October 2019, this time in Cork at the Maryborough Hotel. This was a free workshop open to all with an interest in cancer research.

Partnering with the National Biobank Working Group, this workshop aimed to seek public input into the development of documents that may in the future be used by research teams nationally when asking people to take part in health research biobanks. These documents were a participant information leaflet and a participant informed consent form.

60 participants, made up of members of the public, cancer patients, carers, patient advocates and researchers all gave generously of their time at the workshop to give their opinions on the draft documents in smaller round group table discussions. The questions addressed included often overlooked elements when preparing public documents such as

  • Is the language used easy to understand?
  • Are the questions clear?
  • Is the format well laid out?
  • When is the appropriate time to discuss these forms with patients?

A report on the workshop findings is currently being drafted by the National Biobanking Working Group and will be made available to all who attended the workshop. This report will be the first step in the process to direct this national project to improve how we ask people to participate in health research and what information the public really wants to know. The input of all present also ensures that these documents will be easy to understand and suitable to give to patients when discussing their involvement in research in a hospital setting. It is the ultimate hope that the results of this workshop will help to increase research across Irish hospitals and have a direct improvement on patient care.

In addition to the two hours spent by everyone discussing and feeding back on the draft documents, a number of distinguished speakers delivered short talks about their experiences with cancer and research. The morning’s proceedings were hosted by Prof Amanda Mc Cann (University College Dublin) and Mr Stephen Teap (patient advocate for cervical check reform). Dr Robert O'Connor (Irish Cancer Society) spoke about the importance of funding cancer research in Ireland and in particular how the Irish Cancer Society’s funding of the Patient voice in Cancer Research initiative has enabled it to go nationwide. This was followed by Mr Ramon Whelan, a Patient Voice in Cancer Research (PVCR) committee member, peer support mentor with the Irish Cancer Society and cancer survivor. Ramon spoke of his personal cancer journey and what his involvement with the PVCR has meant to him. Finally, Ms Ann Cullen (National Biobank Working Group) opened the round table facilitation and discussion with her talk entitled “Nothing for us, without us – putting the patient/participant voice first in health research".

The workshop finished with Prof Amanda Mc Cann and Stephen Teap facilitating the feedback from all tables at the workshop and all participants were invited to lunch where informal discussions and chats continued.

If you would like to be added to our mailing list to be informed of upcoming similar workshops in your region, please contact Dr Barbara Hughes at patientvoicecancer@ucd.ie or on (01) 7166809.