Involving Patients and the Public in Discover-NOW

Discover-NOW will only realise our ambition and the potential benefit to millions of people if we have the support, confidence and trust of our communities. Which is why we are committed to engaging and involving patients and the public in a meaningful and authentic way we want to build trust in how data is used and involve more people in designing and delivering research.

Guiding the design and delivery of our PPIE work are three core principles:

1. Inclusive   

We aim to embrace the diversity of our population – ensuring activity is inclusive to reflect the range of diverse voices and views.

2. Honest and authentic 

Transparency, openness and being honest about what can be influenced and the constraints we operate within is essential.

3. Working in partnership and collaboration 

Partnership and collaboration is core to our PPIE approach, not only through working in partnership with our populations, but working with other Health Data UK Research Hubs and organisations to benefit from and share our collective learnings and gained insights.

Empowering Individuals

Empowering individuals to be more involved in research through our:

North West London Health Research Register

NWL Health Research Register is a health research register for North West London, designed to empower more patients and members of the public to take part in health research.

HDRUK black data scientists internship programme 

We are proudly working with Health Data Research UK and its partners across the UK, to be part of an internship programme for Black health data scientists starting in summer 2021.  This will give paid work experience to future Black data scientists; a group currently under-represented within the health data research community. We will be hosting two interns working on a range of projects from 28 June – 6 August 2021.

Involving people with lived experience

Involving people with lived experience to inform design and development of research tools and methodologies.

Risk Algorithms for Decision Support and Adverse Outcomes Reduction (RADAR)

Here we are aiming to develop and test data-driven apps and dashboards, that deliver better information visualisation and decision support directly to front-line clinicians and patients.

 

Working in partnerships with research charities

Working in partnership with medical charities to broaden and enable stronger collaboration to address the needs of patients. We can help support our partners through building relationships with medical research charities to help enrich their work to maximise the impact for patients. 

 

Engaging community leaders and champions

Engaging community leaders and champions to shape research priorities and understand needs, providing opportunity to explore common areas of interest and avoids risk of duplication and mis-alignment.

North West London National Data Lab

Is the first network of its kind, created by The Health Foundation. bringing together analytical teams from across the country to develop a deeper understanding of the factors affecting people’s health in the UK. Part of this the team in NWL have held PPIE workshops representative of the NWL population to explore themes around priorities for health and care. 

Involving our population through deliberation

Involving our population through deliberation to design trusted policy that underpins data use. We believe one of the most effective ways of developing trusted policy in partnership with the public is by investing in a genuine and deliberative discussion with them with involvement and support from leaders in research and data use across multiple sectors.

OneLondon Citizens Summit

Discover-NOW is pleased to have partnered with the OneLondon Local Health Care and Record Exemplar programme to undertake one of the most progressive large-scale public deliberations in the UK about the use of health and care data. 

Discover-NOW Citizens Advisory Group 

Following the Summit recommendation with regards to future involvement of the public in policy development and decision making, we have established a Citizens Advisory Group (CAG) that forms part of the Hub’s governance structure and informs Hub decision making and policy development.

For more information

For all research opportunities and business development enquiries:
Dusan Saska, Business Development Lead
Dusan.saska@imperialcollegehealthpartners.com

For communications enquires:
Katie Harrison, Communications Lead
Katie.harrison@imperialcollegehealthpartners.com