How can I get involved?

People having a conversation

Listening to patient and public voices.

UK SPINE is about bringing people together to share their knowledge around healthy ageing, so it is critical that we make sure we also include patients and members of the public who have experience of and interest in age-related disease and healthy ageing. We are developing and delivering a programme of patient and public involvement and engagement activities to:

  • Raise awareness of healthy ageing research and make sure that research is influenced by patients and the public
  • Provide opportunities and support for patients and the public to get involved in our work
  • Develop insight into public opinion and attitudes to healthy ageing research and use this insight to inform everything we do
  • Reflect the diversity of our ageing society by including as many different people with different experiences as possible

No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.

Professor Dame Sally Davies, Chief Medical Officer (2011-2019)

Engagement and involvement

In research we often talk about engaging and involving members of the public in our work, but what does that mean exactly? We use the term public engagement to talk about any activities where we share research ideas and findings with people. The aims are to raise awareness so that people know what research is happening and how it relates to them, and also to understand different people’s perspectives and views on the work.

Public engagement describes the myriad of ways in which the activity and benefits of…research can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit.

National Coordinating Centre for Public Engagement

Public involvement is the term used to describe when people use their views, opinions and lived experience of a particular subject to help inform and shape research on that subject. It goes further than just finding out about research and includes ways for patient and public voices to change what research gets carried out and how. This might include helping to design research so people can easily take part, or helping to decide which projects go ahead and any modifications that would be beneficial for patients and the public or guiding how that research gets carried out and ultimately shared with the public.

Public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

National Institute for Health Research

Opportunities

Both engagement and involvement can refer to a huge variety of different activities which can cover a broad spectrum of different levels of input from patients and the public. If you have lived experience (as a patient, carer or friend or relative) of multiple long-term conditions we have different opportunities to be involved and we also have options to engage with the project for anyone with an interest in healthy ageing. We’re also keen to hear from patient groups and charities on how we might work together. The opportunities we currently have available are:

  • Surveys and focus groups – to gather opinions and insight into new treatments for age-related illness and to review our engagement content
  • Grant reviewers – to consider healthy ageing research proposals from a public or patient perspective
  • Case studies – we are collecting patient experiences and perspectives to understand themes and priorities
  • To find out more and get involved contact our Public Involvement and Engagement Manager, Leah Fitzsimmons.
  • You can also engage with our work through Twitter and YouTube where you can find out about our findings and events

What do the public think about UK SPINE?

The remit of UK SPINE, like the potential for healthy ageing research, is very broad. We support projects that cover everything from looking for potential new molecular targets for age-related illness, to the conditions needed to get new medicines all the way from theory into a real treatment in patients. To help us develop patient priorities, we’ve held public discussion sessions and focus groups with members of the 1000 Elders and other patient groups. Their key recommendations were:

  1. Not much is known about this work, even by people with an interest in healthy ageing. UK SPINE should help to:
    • create more good quality, easy to understand information that breaks down jargon and technical terms
  2. Patients with several long-term conditions who take multiple medications are well aware of the importance of tackling polypharmacy and multimorbidity* with many who “feel overwhelmed”. UK SPINE should work to:
    • build trust between patients and the Geroscience community where this has been eroded amongst patients who feel their experience or concerns on multiple illnesses or medications have been dismissed
  3. The public are excited by the potential of UK SPINE’s work to do joined up Geroscience and think its impact could be “revolutionary”, but many also feel sceptical because clinical practice seems to be a long way behind people’s lived experience. UK SPINE should ensure they carry out engagement and involvement that:
    • is accountable and transparent, sets out clear expectations and risks (especially where projects are higher risk / higher reward) and involves patients and public in all types of research and knowledge exchange and at all stages from idea to market

* see What is Healthspan Research? for definitions

Public discussion with patients
Public discussions: examples of the types of key questions we have been discussing with patients and the public. We are using our findings to understand and address people’s concerns.

Using patient and public voices to make change

In 2017, the UK Government identified our “Ageing Society” as one of four Grand Challenges for its Industrial Strategy and made a pledge to see citizens achieve “Five more years of independent living by 2035, with reduced health inequalities”. Unfortunately this target does not look set to be achieved. A House of Lords report released in January 2021, reported that:

For men...it will take 75 years to achieve the target at current rates of improvement... For women, healthy life expectancy at birth has decreased in the past decade, further widening the gap between healthy life expectancy and life expectancy...”

Clearly there needs to be more Government support and/or policy change to achieve improvements in healthspan. UK SPINE is engaging with Government and other policy-makers by:

  • Supporting changes to clinical trials to enable people experiencing multimorbidity and polypharmacy to take part
  • Supporting changes to medicines regulations to enable existing drugs to be repurposed where they might improve healthspan
  • Recommending ways that health data and computer-aided predictions can be used to improve treatments for people with multiple long-term conditions
  • Recommending changes to health assessments for older people in line with Geroscience principles; considering health of the whole person instead of individual illnesses. For example, by lobbying for the introduction of Comprehensive Geriatric Assessments by GPs

It is crucial that our policy work also reflects the needs and priorities of the public and patients. If you have experiences or opinions on our work in this area, we’d really like to hear them. Contact our Patient and Public Involvement and Engagement Manager, Leah Fitzsimmons.