Building Research Partnerships: One day workshop



Involving the Public in the Design and Conduct of Research:

Building Research Partnerships

A workshop for Researchers & Members of the Public

11th October 2018, 9:30 am – 4pm, Ulster University Jordanstown



This free workshop will look at practical ways to involve patients and the public as partners (PPI) in the research process. It will explore the issues related to becoming and being a member of the public involved in research and the role of researchers in facilitating this involvement.

The workshop is aimed at patients, carers and members of the public who are interested in getting involved in research and researchers interested in involving patients, carers and the public in their research.

Why should I attend?

  • As a patient, carer or member of the public, you will gain an understanding of what it means to be involved in research at each stage of the research process.
  • As a researcher, you will gain an understanding of how patients, carers and the public can get involved in research, practical tips, the opportunity to share your research expertise and build research partnerships.



To register your interest for this workshop please contact:  or Tel: 028 9536 3399 by 1st October 2018.


Places will only be confirmed after the closing date.



EURORDIS Winter School 2019 applications are now open!


The EURORDIS Winter School on Scientific Innovation and Translational Research consists of one week face-to-face training held in Paris in March.

The next on-site training will take place on 11-15 March 2019 at the Imagine Institute in Paris. Apply now to take part in a week of face-to-face training, applications close 15 September.

Applicants will be notified of the outcome of their application by mid October.

For more information or to register your interest log on to


Building Research Partnerships Workshop: 11 October 2018

The Public Health Agency Research and Development division is pleased to announce the next ‘Involving the Public in the Design and Conduct of Research: Building Research Partnerships’ workshop will take place in Ulster University Jordanstown on 11 October 2018 from 9.30am until 4.00pm.

The workshop is free and open to patients, carers and the public interested in becoming involved in research and to researchers who are interested in involving patients, carers and the public in their research.

For more details and to register your interest to attend please click here.

Regional Swallowing Difficulties Engagement Event

Swallowing Difficulties (Dysphagia) Regional Service User and Carer Engagement Event Thursday 16th August 12:30pm—3:30pm

Seagoe Parish Centre, Portadown

Lunch available on arrival


The Public Health Agency is leading on work across Northern Ireland to help improve safety and quality of life for adults with swallowing difficulties.

They are keen to hear the views of those living with or affected by the condition so if you have swallowing difficulties or if you care for someone who does, your attendance and input at this event would be extremely valued.

The Public Health Agency is particularly keen to engage with service users and carers with experience of dysphagia, including users and/or carers from the key areas below:

  • Adult Learning Disability
  • Neurology
  • Stroke
  • Mental Health
  • Carers of people with dementia or the person with dementia if they are able to attend
  • Those with experience in an acute setting
  • Those in receipt of domiciliary care
  • Those with palliative care needs
  • Private Nursing homes
  • Residential homes

If you wish to attend or would like to discuss in more detail, please contact Martin McCrory, Project Lead, at by Friday 10th August


Queens University Belfast request for research participation

Information, Education, and Social Media Resources for Rare Disease:

Are you part of a collaborative group working in the area of rare diseases in Northern Ireland?

Queen’s University would welcome the opportunity to interview you (via telephone or in person) to evaluate awareness of rare diseases and the related information and educational resources available for patients, their families and healthcare professionals.

We are hoping to improve rare disease resources in Northern Ireland and would appreciate your help so that we can identify important priorities for local development.  This may be creating new information or signposting local individuals to excellent resources that exist elsewhere.

We would love to hear from you.  If you are interested in knowing more please contact Julie McMullan via email at

Thank you for considering being part of this important research!

Encompass Programme Update

For anyone interested in progress on the health transformation strategy, please find attached a link at the bottom of the page to an update on NICVA’s web site from the Department of Health.
The Update covers the Encompass Programme which will create a single digital health record for everyone. Health professionals will be able to access these records as they need to but significantly the individual will also be able to access their own record securely and interact with the system.
Also included in the update:
• HSC Workforce Strategy
• Transformation Funding
• Elective Care Centres
• TIG at NICON18
• Transforming Cancer Services
• Looked After Children
• Social Procurement Clauses

Palliative Care Talks: Children’s Palliative Care with Lucy, Sharon & Steph

It’s great to see that #StrongerTogether” is evident everywhere.
Open discussions about palliative care help demystify the misunderstanding that it is about dying when in reality it is more often about living.
Thanks for this inspiring insight into palliative care from those that are living the experience.
The ongoing drive to champion this speciality will improve services and most importantly the lived experience for patients and families.

Queen’s University Seeking Input by Those Affected by Rare Cancers


Are you someone living with rare cancer, or a carer of someone who is?

Are you interested in shaping and improving information and support for people living and working with rare cancer?

Then get in touch by the 1st June 2018 by emailing Julie McMullan

Queen’s University Belfast would value your input and expertise, in shaping and developing their research project.  At this stage they only need your permission to be named as an individual involved in the proposal, as we are currently at the initial stages of seeking funding for the research.

If successful in reaching the next stage of the application, Queen’s University will be in touch to invite you to share your input in co-developing the content and enhance the research design, to help make the project more worthwhile and effective in addressing needs and disseminate findings in a way that is of greatest benefit to you.

Your views matter so please get in touch to make your opinions count.

The project is funded by McMillian Cancer Support. Details of the scheme

The [ART] in Family: An interview with Susie Rea

Susie Rea, one of the recent winners at our poster competition, held during the March conference, is reaching out for participants who can help her with her photography work as part of her PhD studies.

Her focus is on those impacted by Advanced Reproductive Technologies.

We were keen to interview Susie to find out a little more about her, her studies and her work.

To find out how you can get involved in this fantastic project, read on!


Tell us a bit about yourself:

I am a photographic artist and PhD researcher at Ulster University in Belfast. My work explores the fault lines where medicine, technology and society meet.


What is the study about?

Advanced reproductive technologies (ART) present ordinary families living with genetic disease or disability with some of the most challenging decisions gripping society today. I am interested in the complexities of these decisions. To understand them, you must try to walk in someone else’s shoes, and think about their lives and their choices. The challenge of this project for me as an artist, is to create a series of photographic portraits that communicate some of these difficult issues to the viewer through the medium of the family photograph.


Who can take part?

The project will involve finding, photographing and interviewing ten families. The families who participate will all have dealt with these challenging decisions. They will be willing to discuss the decisions they have made publicly and will be comfortable with having a visual representation of themselves disseminated in the public domain. Some families will have actively chosen to use ART and others will, after consideration, have opted not to. The project is about both of these choices, the reasons for them, and the path eventually taken.

The term assisted reproductive technologies or ART refers to in-vitro fertilisation techniques such as pre-implantation genetic diagnosis (PGD) and pre-implantation tissue typing (PTT). The project is focused, in the main, on these new cutting-edge biotechnologies. However, prenatal diagnosis (PND) and chorionic villus sampling (CVS) are techniques that some families have opted to use instead of ART, as a result of their specific circumstances, and these families will also be considered eligible for the project.


What’s involved in taking part?

Participation is entirely voluntary. If you decide you would like to take part, every member of your family will be provided with a detailed information sheet and will be asked to sign a photographic and audio release form. It will be the responsibility of one parent/guardian of any children under 18 years of age, or vulnerable adult participants to give consent. If you agree to take part, I will arrange to meet, or speak with you, in advance of the photographic and audio interview session to introduce myself. This will be an opportunity for me to take you through the details of the project and talk through the consent to ensure that you understand what participation in the project entails. We will then organise a mutually convenient time for me to visit you at your home. The photographic session and interview will take approximately three hours and the format of the photograph will be a conventional family portrait. I want you to be yourselves, so there will be no need to dress up or tidy up!


Are there any risks?

The study involves a photographic shoot and interview session, so the risks in participation are minimal.


Who will benefit?

The artworks that will be produced from these sessions will be used for research and exhibition purposes. The consent form for the images and the audio interviews will therefore cover multiple media platforms. It is hoped that the exhibition will raise a positive discussion in the public domain about ART, families living with genetic disease, and the societal impact of these new technologies.

This research is part of a PhD which is funded by the Department for the Economy (DfE) and is being conducted on behalf of Ulster University. The study has been reviewed by the Ethics Committee at Ulster University in accordance with the University’s guidelines.


How do I find out more?

Susie Rea

PhD Researcher




Foyle and North West Forum meeting update

The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference to:

  • Support for carers available via the health and social care trusts
  • Importance of raising the profile of rare disease by telling our stories – thanks to Anita McDowell for allowing her story to be shared via the Derry Journal. Attendees were encouraged to utilise 10,000 more voices initiative to share their patient experience
  • Courses offered by recovery colleges and how to influence their prospectus
  • Challenges associated with travelling outside NI for medical appointments
  • Challenges for children and parents accessing appropriate educational support with rare conditions. Signposting to SENAC is advised but need to be aware the service is in high demand and early intervention is important .
  • Education Authorities are working under tight budgetary constraints and access to Statutory Assessment and the Statementing process and subsequent provision of support can be delayed.

We look forward to hearing more about the potential for an EDS and associated conditions conference that is being proposed by EDS UK with support from NIRDP.

The group will continue to meet quarterly, next meeting will be planned for September with details to follow.