Photo Courtesy of Bronac McNeill Photography

Patient Participation, Involvement & Engagement

Patients play a key role in the development of the mitochondrial services we provide and the mitochondrial research we undertake.

For clinical services, we will often ask for feedback through 'clinic evaluation forms' and you are always encouraged to share your experiences or make suggestions directly to your centre. Your feedback will help us optimise and improve the services we offer.

We also develop and design 'Patient Information Days' to focus on topics and areas that patients have identified as priorities for them. We evaluate all Patient Information Days and use feedback to plan future events.

Your involvement can directly help shape the services we provide.

In addition to clinical services, patient participation, involvement and engagement are essential for the mitochondrial research we undertake.  Whether this is participating directly in a research study or being involved in shaping the type of research we do and how we do it, the patient voice is essential.

You can get involved as follows:

1. Participation - Cohort Study

The Cohort study is a computer database about patients with Mitochondrial Disease, and is the main way that people with Mitochondrial Disease are contacted and invited to participate in research. 

If you would like more information about the Cohort Study you can find it in the research section of this website.

2. Involvement

Involvement is where members of the public become actively involved with research in order to improve the research we do, and the healthcare services we provide. By getting involved, you can help us improve the quality and relevance of the research we undertake.

'Patient involvement workshops' allow us to listen to your experiences and ideas, which then enable us to steer the direction of future research studies.  

Ways to get involved

There are a number of ways you can get involved:

- Helping us to identify and prioritise our research

As a person affected by Mitochondrial Disease, your priorities may be different to the priorities of clinicians and the researchers. We need to work together with patients and the public to agree priorities of a mutual benefit.

- Designing and management of research

As a patient you will have a personal experience of Mitochondrial Disease and may have views on which research outcomes or methods may be most relevant, practical and appropriate to use.

- Disseminating research

In order for research to benefit people affected by Mitochondrial Disease, it is important that research findings are communicated in a simple and clear way - you can read about how we do this in the 'engagement' section of this page below.

It is also vital that this information is effectively shared across all groups with a specific interest.

As a patient or member of the public, you have access to unique networks within which to share information, as well as having a valuable insight into how this research can affect you. We actively encourage patients and the public to be involved in understanding research findings, so they can share this information more widely and we value suggestions on how we can help with this.

- Implementation

It is important that research findings and suggested improvements are acted upon in a way that ultimately improves future research and the services we provide.

Patient and public involvement is essential in order to ensure everyone involved in clinical and research decision making, hear about and take action on recent developments and findings.

- Further information

For further information or to get involved in mitochondrial patient research please contact:

- London - Dr Rob Pitceathly - r.pitceathly@ucl.ac.uk 

- Newcastle - Dr Julie Murphy - Julie.Murphy@ncl.ac.uk

- Oxford - mitohelp@ouh.nhs.uk

For further information on how to get involved in general medical research please see the Involve website

3. Engagement

Teams in all centres actively share research findings with patients and members of the public to:

  • help raise awareness of Mitochondrial Disease;
  • highlight current research in the NHS;
  • share learnings from our studies;
  • gain new insights on research from questions and feedback from the wider public.

We work with NHS and Wellcome Trust funded engagement specialists to improve and find new ways to engage people affected by Mitochondrial Disease.

Examples of some of the engagement activities the Rare Mitochondrial Disease services have been involved with are:

  • Participating in the annual Lily Foundation Family Day;
  • Giving talks to the public at the International Centre for Life, Newcastle;
  • Working with the Wellcome Trust Centre for Mitochondrial Research to run “hands on exhibits” at the National History Museum in London;
  • Annual mitochondrial patient days across the UK.

All staff are encouraged to participate in engagement activities, and patient and public engagement training.

Dr Andrew Scheafer presenting a talk on 'Current treatment strategies' at a Lily Foundation Family Day
Clinical scientists presenting their research in new ways at the annual mitochondrial patient day (Photos courtesy of Dru Dodds).
Clinical scientists presenting their research in new ways at the Newcastle annual mitochondrial patient day (Photos courtesy of Dru Dodds)