Public & Patients

Chief Medical Officer and Chief Scientific Adviser to the Department of Health, Dame Professor Sally Davis stated, there is “a huge benefit” to patients from commercial research being conducted within the NHS. “It gives early access to cutting-edge treatments and technologies, and ensures best care for patients throughout the study.” The National Institute for Health Research (NIHR) is a government body that coordinates and funds research for the NHS. It encourages patients and the public to be actively involved in all NIHR-funded health and social care research with the aim of “Improving the health and wealth of the nation through research”. One essential criterion for all NIHR related activity is involvement of patients in all stages – from design to execution- of research activity. Two years ago, we created the NECTAR brand (NEwcastle Cardiovascular Trials And Research) as a means of focusing attention within the Directorate on clinical trials and research.

What is PCPI? We have established a very active patient, carer and public involvement (PCPI) group that meets 4 times a year and its input has been central to revising research studies before grant submissions. The agenda for these meetings are designed to seek advice, educate and encourage debate on all things cardiovascular: we present early ideas on research studies that require further development and gather feedback to improve grant and/or ethics applications. We present results of completed trials, provide a forum for educational talks and present cutting edge developments in cardiovascular medicine that can improve patients lives. Within this PCPI group, we have formed a working group who in addition to other tasks have created a newsletter that is distributed to the wider group. The purpose of the newsletter is to inform interested members of the public about cardiovascular research activity within Newcastle hospitals, to reach patients and the public who are currently unable to attend our PCPI meetings with information regarding current trials and a summary of the activity of the previous meetings. In addition the newsletter has a ‘glossary of terms’ explaining medical terminology in lay terms, which patients really enjoy, and ‘patient experiences’ with their or their family’s accounts of being involved in research. Essentially the newsletter is a way of promoting the group to the wider population.