Our Patient and Public Voice Panel (PPVP) has been formed for one purpose; to ensure that the views and opinions of patients, carers, and families are central to the work and primary role of the North West Genomic Medicine Service Alliance; embedding genomics into routine healthcare across our region.

The PPV Panel collaborates with the Alliance, to: 

  • Ensure patient, family and carer voices are heard at a senior levels within, and inform decision making across the North West GMSA.
  • Discuss openly the challenges and opportunities for genomics in the region.
  • Reflect patient, family and carer experiences and priorities through review and input into our business planning, workstreams,  and the development of genomic services across the NHS.
  • Consider and address barriers to equity of access and experience of services across the region.
  • Raise awareness of genomics and its potential impact amongst patients and the public, and share the experiences of people whose care involves genomics.

Membership is made up of representatives from across the North West and North of England, bringing together a wide range of life experience, including genetic testing.  

Several members of our panel have shared their stories and why they joined us.  Click on the tab to find out more.

Hello.  My name is Angela.

As a patient with Black heritage, my journey within patient and public engagement groups has been transformative, empowering, and deeply meaningful; I feel I have gained so much more in learning from the experiences of others, as well as sharing my own.

The area of genomics and genomics medicine is of specific interest to me, due to lived experience of sickle cell anaemia trait within my family, and throughout my working career as HR director within the NHS.  In this role, I had responsibility for establishing several Equality and Diversity policies as well as involvement in delivering training sessions.

I have 14 years’ experience of volunteering within a number of patient and public involvement groups, as I feel they provide an essential platform to advocate for the needs of Black, and other minority ethnic communities, within the healthcare system.

Patient and Public Panels, such as the Alliance’s Patient and Public Voice Panel (PPVP) aim to bridge the gap between healthcare providers and patients, fostering collaboration and co-designing healthcare services that reflect the diverse needs of our communities. 

The PPVP provides a safe space where we can share our unique perspectives and bring attention to issues that might otherwise go unnoticed. Being able to advocate for equitable access to genomics and genomics medicine is vital, so I feel that I am helping to combat stereotypes and ensure that healthcare services are designed to be inclusive, and respectful of diverse backgrounds. 

I can contribute to discussions about transformational projects, research programs, and culturally competent healthcare practices that directly address these disparities.  Collaboration is at the heart of everything we try to achieve.

Together, we can initiate conversations about the importance of diversity and representation, and by advocating for more inclusive participation, we can ensure that genomics and genomics medicine will benefit everyone, regardless of their racial or ethnic background.

As we continue to raise our voices and advocate for change, we can make a significant impact on the healthcare landscape and pave the way for a healthier and more inclusive future.

 

Orginally produced in support of Black History Month 2023

 

Hello.  My name is Emily.

I became a PPVP member as I wanted to share my perspective on the development of genomics to improve health care.  For instance, I was pleased to support the promotion of genomic medicine in healthcare where individualised care can be enhanced by offering patients certain medicines from which we are confident they can benefit from and not offering medicines that are unlikely to help them. 

As a member, there are also opportunities open to me including education and training, so that I can increase my understanding in genomics which in turn helps to make my contribution more effective.

Because you are a unique person in your own right so I think you should join too!

Hello. My name is Hamad.

I joined the PPVP for the North West of England, for so many reasons.

One was I have a vested interest in Genomics as it would have definately helped in my family health conditions. So by joining I am able to be empowered, gain knowledge and actually speak and liase with the clinical experts. This makes me feel inclusive, so well supported and and have the confidence to to speak to my community about the fantastic support and signposting to more people, so that im not alone in my journey.

I can gain answers to many many questions that I may have or that people I know may also be seeking answers for.

There's an opportunity to have excellent training through online courses, get the latest developments and be at the forfront of research based outcomes.

I also wanted to be able to help others and here I can do that, and get people that involvement on projects that most definitely can be of help.

Lastly I feel great that it actually allows me to make that difference, even if through my involvement. Genomics allows for more indivdualistic and improved medicine; and if it saves just one life, then I know it was well worth it.

My advice is come along, meet some of the people involved, ask your questions, and have your most needed and valued voice listened too in a non judgemental environment.  Feel safe to have your say in a confidential place, know that you are respected, and that your shaping the future of healthcare.

 

Want to know more?

Recruitment continues as we want the panel to be representative of the population we serve, so if you or a family member have:

  1. live in the North West, with lived experience of genetic testing or
  2. received care in the North West, have a connection to the area, or
  3. an general interest in genomics and would like to inform improvements within the NHS, 

then we would like to hear from you,  as all applications are welcomed.  

We are particularly keen for the panel to be representative of the following groups:

  • Young adult (18 years +)
  • People identifying as LGBTQIA+
  • Individuals from minority ethnic background     

If you would like to speak to someone to find out more and without obligation, please email Barbara Coleman, Communications and PPIE Lead, at barbara.coleman@nw-gmsa.nhs.uk 

More information and a copy of our application pack is available here.