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Streamlining patient participation in health research biobanks

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Maryborough Hotel & Spa

Maryborough Hill

Douglas

Cork

Ireland

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Event description
Seeking patient input into the development of documents for use when asking people to take part in health research biobanks.

About this Event

What is the aim of this workshop?

The aim of this workshop is to seek public input into the development of documents that may be used by research teams nationally when asking people to take part in health research biobanks in future. These documents are a participant information leaflet (PIL) and participant informed consent form (ICF).

What will I be asked to do?

You will be asked to give your opinion of the draft documents prepared (for example: 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?).

What will I get out of being involved?

• Your input will help direct this national project to improve how we ask people to participate in health research and what information the public really want to know.

• Your input will ensure these documents are easy to understand and suitable to give to patients when discussing their involvement in health research.

• Research-active hospitals have better patient outcomes. We hope this national initiative will increase the level of research across Irish hospitals and have a direct improvement on patient care.

About us

The Patient Voice in Cancer Research (PVCR) is an initiative to actively engage cancer patients, cancer researchers and other interested parties (patient advocates, families, carers, healthcare professionals, policy-makers and those with an interest in cancer research), in discussions and decision-making processes, which positively impact on cancer research and outcomes for patients.

The Patient Voice in Cancer Research is supported by Irish Cancer Society research grant PVCR19MCC

The National Biobanking Working Group (NBWG) is a group of people working in the field of health research who are passionate about improving biobanking in Ireland. Biobanking is the collection and use of human samples, such as blood or tissue samples, and healthcare data used for health research. Facilitated by Clinical Research Development Ireland (CRDI), the NBWG was formed in January 2019 to address concerns nationally that researchers had in terms of consent and the use of patients samples and data specifically for research purposes.

More information about this workshop?

A key objective of the NBWG is to develop a national patient information leaflet (PIL) and informed consent form (ICF) template that will address the challenge of preparing a document that is clear and easy to understand while also compliant with the requirements of different research ethics committees and data protection regulations. It is important that these documents are co-developed with public and patient input. Those who choose to donate their samples and data to research need to be involved through all stages of this project.

Researchers nationally want to ensure that patients/participants legal rights are respected, that their choice to give their samples and data for health research is informed and freely given, that samples and associated data are stored, managed and used both in an ethically and legally compliant way.

At present, each hospital has their own specific PILs and ICFs, which are reviewed and approved for use by the hospitals’ Research Ethics Committee or a nationally approved Research Ethics Committee. Patient involvement in the development and design of these documents may be limited, if at all.

It is the group’s aim to present a national, harmonised PIL and ICF, which has been developed with patients, for patients, to the Data Protection Commission and the Data Protection Officers national forum. It is hoped that this PIL and ICF will be accepted and approved by them and used nationally going forward within hospitals for consenting patients to participate in health research biobanks.

We are delighted to partner with the Patient Voice in Cancer Research in this workshop to engage with patients and the public to reach our goal.

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Date and Time

Location

Maryborough Hotel & Spa

Maryborough Hill

Douglas

Cork

Ireland

View Map

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