Templates & Guides
Health research charities are important leaders in research which addresses the unmet health needs of patients and the public. For charities wishing to strengthen their approach to research governance, there are many things to take into account. This guide aims to make that easier, by leading you through the issues that you need to consider. […]
How do we begin the conversation about research involvement with patients and the public? This new PPI toolkit helps health research charities and others starting on the journey to tackle this challenge. It offers particular guidance on facilitating a first workshop with PPI contributors. It was developed in partnership by TCD PPI Ignite, HRCI and […]
Rare diseases are characterised by their relatively low prevalence (less than 1 in 2,000 people in the EU). To have a rare disease is to have a condition that often goes undiagnosed for years. Doctors may never have seen the condition before and hospital diagnostic services may struggle to find the rare disease presented by […]
On 30 May 2019, a group of patient-focused organisations and other interested parties attended Health Research Charities Ireland (at the time called the Medical Research Charities Group) ‘Evidence for Advocacy’ seminar. They heard diverse perspectives from experts in research, policy and public relations (PR) and were also presented with case studies from a number of charities sharing refreshingly honest accounts of their experiences. By focusing on advocacy through a research lens, the event highlighted the power of taking an evidence-informed approach to support advocacy campaigns and to guide efforts to improve health.
This practical guide follows on from that seminar and draws on the information presented by the speakers, contributions from the floor, as well as the expertise of the authors and Health Research Charities Ireland (HRCI). We are very grateful to all who contributed.
HRCI has partnered with the Charities Research Involvement Group in the UK, to produce guidance on PPI in Industry. The guide was launched in September 2019 and focuses on how to overcome the issues that health research charities often face when encouraging or participating in industry-led PPI and offers practical advice on how to do […]
September 2018 Patient registries are broadly recognised as a critical underpinning for improving healthcare through research. As an umbrella organisation for many medical research charities intimately involved in this pursuit, registries are a reoccurring theme. Despite their importance however, in too many cases, registries remain a thing of the future. The challenges to developing registries […]
February 2018 This is a template code which can be used by patient organisations to guide their involvement with industry. We recommend that organisations adapt it, according to their own situation and needs. Developed by Health Research Charities Ireland. Patient Organisation Code of Practice: Engaging with the Healthcare Industry (code_pat_orgs.pdf | 615 kB)