The latest news from the Human Tissue Authority
View this email in your browser
Public newsletter

Organ donation week

Organ donation week is a national NHS campaign which aims to increase awareness around organ donation and increase the number of people whose lives can be saved or transformed by an organ transplant. This year, it will take place from Monday 2 September – Sunday 8 September. 
The HTA will be using organ donation week as an opportunity to explain how we licence and audit transplant centres that undertake organ donation and transplantation across the UK.

Our regulation makes sure that the quality and safety of organs for transplantation is maintained, and that they are used safely and with consent. 
NHS Blood and Transplant (NHSBT) will be running a campaign, ‘Pass It On’, which aims to increase public awareness and understanding of the new 'opt-out’ system. This new system will come into effect in England from spring 2020. 

Under this new system, everyone will be considered a potential organ and tissue donor when they die unless you are in or if they are in one of the excluded groups or if you have recorded a decision not to donate. The NHS Organ Donor Register operates throughout the UK and allows you to record your decision about donating your organs and tissue.

Alongside NHSBT, we will be highlighting the continued importance of discussing and sharing decisions about organ donation with family members. The opt-out system will still consult families of potential donors regarding organ and tissue donation, and to gain their support. Families also play an important role in ensuring that organ donation goes ahead in line with your faith or beliefs, and can provide important information about your medical history.

World transplant games 

The World Transplant Games took place between Saturday 17 August – Saturday 24 August in Newcastle.

This year, around 2,237 athletes from 60 countries took part in a wide range of sporting events.

This annual event celebrates transplants, donors, patients and families, and a second change of life.

It encourages patients to regain fitness after the success of transplant surgery and raises public awareness of organ and tissue donation.

Catch the highlights from the World Transplant Games on their Facebook page.

Review of public dialogue on consent in health research 

Last year, we published a joint report with the Health Research Authority (HRA) on the findings of a public dialogue.

The aim of this was to understand the public's attitudes and awareness towards the importance of donated tissue being linked to patient health data.

We also wanted an insight into the reassurances that the public may need in order to provide their consent. The findings of this work are particularly relevant to biobanks. 

A biobank (or research tissue bank) is a collection of human tissue or other biological material, which is stored for use in research. This research improves the understanding of health and complex diseases. Biobanks therefore play a crucial role in health research.

Consent is crucial 

When it comes to linking data to tissue for use in research projects, consent dictates how much information can be shared, in what circumstances, and for how long. 

One year on...

Following publication of the report, the HRA and HTA carried out an extensive review to identify those areas not already covered by our existing guidance.

We found that the majority of the recommendations are either addressed by our existing guidance or can be addressed with minor modifications that will be made as part of our routine review procedures.

Furthermore, the HRA, in collaboration with the HTA, will be leading on three important projects over the rest of this year and beyond.

Through this and our other joint initiatives, we aim to continue to make the UK a great place to do health research, building public confidence and trust so that more people are willing to donate their tissue for scientific and medical research.

Find out more

Read the HTA's latest blogs

Since our last newsletter, we have posted three new blogs:

Organ donation: Lessons from Wales
Mike Stephens, Consultant Transplant and Organ Retrieval Surgeon at the University Hospital of Wales reflects on his experience in Wales’ move to an ‘opt-out’ system of organ donation and what lessons can be drawn from it.

The God of Small Things…
Mat Silk, our Our Head of Communications, explains how the little things can be so important when dealing with human tissue and remains.

Eight things you should consider before setting up a biobank
Professor Andy Hall, a member of our board, explains what needs to be considered before setting up a biobank. 

Keep up to date with the blog!

You can follow our blog and receive notifications when we publish any new ones. You can also follow a specific blog post and receive updates when new comments are added. Check it out!

As always, we are keen to hear your suggestions for upcoming blog posts. So please do let us know your thoughts.

HRA's 'Make It Public' consultation 

The Health Research Authority (HRA) are the regulator who protect and promote the interests of patients and the public. They make sure that research is ethically reviewed and approved, promote transparency, and provide expert advice on the use of confidential patient information. 

Make It Public

The HRA is currently seeking comments on their draft strategy, 'Make It Public.' The strategy covers health and social care research taking place in the UK which involves people, their tissue, or their personal data.

Your feedback will ensure that the final strategy provides clear direction on how to make sure that patients, the public and professionals can easily access useful and clear information about research studies and its findings.  

You have until Friday 6 September to take part in their online consultation.

Have your say!

Sands bereavement support book

Sands, the stillbirth and neonatal death charity, aims to reduce the number of babies dying and ensure that anyone affected by the death of a baby receives care and support.

Sands have recently published a new bereavement support book, which provides bereaved parents and families with support and information. It covers funeral arrangements and explains what to expect from a post-mortem examination. This information is also available to download as an app.

We have worked with Sands to provide health professionals with guidance on how to approach and inform bereaved parents on their available options, so that they can make informed choices. 

MHRA consultation on how best to engage patients and the public

The Medicines and Healthcare products Regulatory Agency (MHRA) is responsible for ensuring that medicines and medical devices work and are acceptably safe. They are currently consulting on how best to engage patients and the public in their work.

The consultation will explore how patients and the public would like the MHRA to communicate with them. It will also explore how patients and the public would like to communicate with the MHRA to raise concerns, and how the MHRA can best respond.

You have until Monday 7 October to take part, which you can do
Have your say!

Join our public panel

As a newsletter subscriber, we know the work of the HTA is important to you.
You can play a part in improving our work by joining our public panel. In doing so, you will help us to produce useful information for the public, so that we can better inform people of our work which is to ensure that human tissue and organs are used safely, ethically, and with proper consent.

Taking part is easy

We may require your feedback when publishing new material. This could be a guide to a new medical technique that people are talking about, an update to our policies, or anything else that we would like your opinion on. Recently, we collaborated with our public panel to create information on cryonics - the cryopreservation of bodies after death.

We are not looking for experts, your honest feedback helps us to communicate clearly and share information that is easy to find and understand. There's no obligation, you can choose when you'd like to give us your feedback.

Join our public panel
Copyright © 2019 Human Tissue Authority, All rights reserved.

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.