Research Ready Surrey

What does your organisation do?

Alliance for Better Care is a Community Interest Company which brings together 47 GP practices across Surrey and Sussex to work together in partnership. We support our GP practices, hospitals, and community groups to focus on an integrated approach for healthcare delivery.

Our mission is to transform how people manage their health in their community so that we can all live happier lives. We focus on all residents including underrepresented groups, refugees, asylum seekers, children, and young persons.

How has your organisation been involved in research?

We collate lots of important insights to improve the delivery of social care for the communities we work with but do not consider ourselves as engaging in ‘real’ research currently. We use the insights of problems and challenges we gather to find creative, organic solutions.

What are the barriers to getting involved in research?

Currently our biggest obstacle to being involved with research is access to funding. Sharing information can also be difficult when separate projects use different data collection tools.

What has worked well?

We prioritise trust with the groups and communities we support, and we are committed to maintaining this.

We have recently hosted a series of workshops designed to bring together residents and community partners wishing to improve the health and wellbeing of residents, and the delivery of local NHS services.

Where do you want to go with research?

We are piloting a scheme looking at personalised health budgets for residents to use for things like bus tickets or to purchase bikes through a third-party organisation. We want to use research to monitor the impact of this scheme. We also want to evaluate previous work to allow us to strategically plan our next phase.

Can people get in touch to find out more?

Of course, please visit the Alliance for Better Care website and subscribe to our mailing list to be kept in the loop about our future work.

What does your organisation do?

Good Company has been running since 2012 and started originally as a food bank.

We run a wide range of projects across Surrey, including five food banks, the Poverty Truth commission, Epsom and Ewell Refugee Network, Epsom Pantry. We also provide money advice surgeries, furniture, support, school uniforms, energy top ups and counselling. Our mission is to see a community free from poverty, where everyone can afford life’s essentials.

How has your organisation been involved in research?

We are a franchisee of the Trussell Trust foodbanks. We regularly collate usage statistics on employment status, repeat visits and other demographics.

We have hosted focus groups to understand how to do research in communities and we are developing a Theory of Change framework. Our Poverty Lead is a trained social researcher, who identifies opportunities for research projects through their engagement and participation work, so that we ensure our work is user-led.

Have you seen an impact because of your research?

Yes. Our research has enabled us to understand why people use food banks and the support received by users. We have identified three types of food bank user, based on their usage pattern:

• Crisis
• Coping
• Chronic

We are now able target support that is bespoke to each type of user group. For example, we created a peer group Christmas saving scheme.

What are the barriers to getting involved in research?

As with many charities, we have little time. Finding the additional costs to undertake research is also a challenge. We also struggle with ‘closed shop’ cultures, where opportunities to share our findings to enable meaningful actions is limited.

What has worked well?

We are fortunate to be part of a flexible, ‘light touch’ national organisation, with good networks. This allows us to access support for admin and governance tasks. This frees up time and resources for us to do more engagement and inevitably improves the impact of research and support that we offer.

What would make getting involved in research easier?

It would be great if VCSE organisations in Surrey had named researchers within the NHS or Surrey County Council that could support and enable the meaningful production of research and create regular information sharing opportunities. Better connectivity across all sectors and an increase in audit activity would help us share outcomes and learn what impact measurements are being used by others.

Having more forums to share with researchers about how our communications, actions and research has driven change and created impact could support the development of better evidence and long term interventions for the people we serve.

Where do you want to go with research?

We want to build an online referral system that allows us to gather knowledge of the themes and profiles of people that are common across our services.

This will help us improve how we signpost people (to avoid duplicating information and repeated storytelling) and will also allow us to learn what our community needs are. We would also like to ‘put faces’ to the statistics through more qualitative research, and of course, we are open to collaborating with researchers on relevant projects.

Can people get in touch to find out more?

Yes!  We are open to more research and collaboration opportunities. Please visit our Good Company – Supporting Our Community website for more information or email tom@goodcompany.org.uk

What does your organisation do?

Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) was founded in 2018, by Harry’s family and friends, following Harry’s diagnosis with hydrocephalus (water on the brain). We became a registered charity in 2019.

Our overall aim is to make life better for children with hydrocephalus, as well as for those who love and care for them. We want to raise awareness, fund research, train nurses and connect families.

The charity has grown holistically based on need and input from other families who are also on the same journey.

How has your organisation been involved in research?

To achieve our aims, we need to understand the challenges faced by children and their families and learn about their experiences of hydrocephalus.

We do this through family and carer engagement work. This includes gathering insights via social media, online questionnaires, group workshops and detailed 1:1 interviews. We also work with universities, health organisations and other charities to share our findings.

Have you seen an impact as a result of your research?

In November 2020, we began our first ‘research project’ on lived experiences and attitudes to antenatal screening and post-natal care.

We worked with students from Royal Hollway University to run an online survey and we met with families via 1:1 sessions and group discussions to learn about their experiences. The output was shared at the annual British Paediatric Neurosurgery Group Conference and the insights informed our subsequent user-led research and insights studies.

Since then, we have completed five national research and insight gathering projects with families. We have also carried out a project on hydrocephalus with neurosurgery professionals.

The findings have been presented at academic and health conferences both nationally and internationally, leading to three national awareness campaigns. This has led to the development of new clinical devices and protocols.

What are the barriers to getting involved in research?

Access to funding is an ongoing issue. It is also challenging getting access to NHS hospital data with the costs involved and ethical approvals required.

What has worked well?

We are embedded in the communities we serve so can listen and build trust. We are lucky to have trustees with relevant experience and expertise in fundraising, governance, and social research.

Collaborations with universities, health innovation networks and nurses have really helped build our research expertise and capacity. Sharing our research via our website has been positive and we can make sure accessible formats are available which helps more people access our research.

Where do you want to go with research?

We have launched a UK Paediatric Hydrocephalus Network group to connect patients, families, clinicians and researchers. This amplifies patient and family voices, helps implement research projects which are patient and family-focused and raises the profile of UK paediatric hydrocephalus research.

Is there anything else you would like people to know?

We would like researchers to think about co-production and have the following things to consider when conducting research.

• Make sure transport and cost is not a barrier to participation. Details of reimbursement should be clear and outlined from the beginning of the engagement.
• When working with children and families, please ensure the venue is nice, comfortable, and accessible.
• Families with children with disabilities can often be tired and stressed. Please be kind and recognise that their time is valuable.
• Make sure your communications and expectations are clear and jargon free.
• Please feedback your results to show families where their effort has gone.

Can people get in touch to find out more?

Certainly. Please reach out to us via the form on the contact section of our website, located in the ‘About’ section.

Contact - Harry's Hat (harrys-hat.org)

What does your organisation do?

Founded in 1984, I Choose Freedom is a small Surrey based independent charity dedicated to providing refuge and a path to freedom for survivors of domestic abuse.

We have three refuges that house women and children and we also offer eight self-contained units for any survivor of domestic abuse.

We have helped thousands of women and children live safely and we are the largest provider of refuges in Surrey.  We are also the only provider offering accommodation to any survivor of domestic abuse in Surrey.

How has your organisation been involved in research?

We have worked with Surrey County Council on their Joint Strategic Needs Assessment for Housing and Related Support.

We have also contributed to a national research programme with the Institute for Addressing Strangulation (IFAS) on the effects of strangulation on cognitive abilities.

We have displayed several case studies on our website from women and children we have provided refuge to.

What are the barriers to getting involved in research?

As we don’t regularly conduct research, our confidence and experience is currently low. Training in the correct methods would really help us take the next step.

The women we support are hidden in plain sight which prevents us sharing their details. Therefore, we must be especially careful about how we get involved in research. In addition, funding is also a barrier.

Unfortunately, we often find that domestic abuse and subsequent research is not currently viewed as a priority by all professionals.

What has worked well?

We are passionate about working with our communities and we do this in many ways. This includes identifying our training needs and the priorities of the people we support.

What would make getting involved in research easier?

We work with an extremely vulnerable population. Additional guidance on what we should consider when carrying out research with participants. This includes getting help to define research questions, and support to understand what ethical factors need to be considered.

It would also be beneficial to improve our understanding on how we adhere to best practice.

Where do you want to go with research?

We want to make a difference nationally by creating a change to laws and raising awareness.

Our current research is quite observational. We feel that having more concrete data would give us a platform, and improve our confidence, to advocate for additional resources.

Can people get in touch to find out more?

You can contact us via: info@ichoosefreedom.co.uk

What does your organisation do?

Many people think that hospices are all about dying. We disagree. We believe that end of life care is about helping people live every moment to the full, in comfort and dignity.

We achieve this through our four priorities:

Developing and expanding our specialist care.

Empowering people in our communities who are caring for people at end of life.

Enhancing our education, research and learning programmes to encourage and support an environment for innovation.

Enhancing our collaborative influence in palliative and end of life care through leadership and advocacy.

How has your organisation been involved in research?

We aim to improve palliative and end of life care for everyone. One important way of doing this is through research.

Our team of doctors, nurses and therapists regularly contribute to research, networks and initiatives to improve care for the dying. They also share their knowledge at conferences and publish their research.

We have been a research active hospice for more than 20 years. Our primary role is to enable research at the hospice for academics with established research projects.

We have a team of two research leads who manage this, from obtaining research committee approval through to the delivery of the studies. As well as research with a clinical focus, we are now increasingly including social research in our work.

What are the barriers to getting involved in research?

The term ‘research’ can be confusing because of the difference between clinical and social research. There are very different criteria and levels of scrutiny required for both, which complicates things.

What has worked well?

We have had very positive experiences of academic collaborations, including large scale national and international research.

What would make getting involved in research easier?

We would like to become more involved in generating our own research projects and identifying research opportunities that serve more diverse populations. This of course comes with the caveats of needing resource, expertise and time.

Where do you want to go with research?

We would like to collaborate more with other hospices to generate research as well as improving links with academic institutions.

We want to improve the work we do with everyone who uses our services either now or in the future. This includes those who are recently bereaved, as well as those living with frailty and non-malignant diseases.

We also know there is an opportunity to better serve more diverse populations who might not traditionally use hospice care.

In the long term, we would like to become more proactive in generating our own research, as well as implementing the results from external studies.

Is there anything else you would like people to know?

Hospices are quite misunderstood and are different from many other Voluntary Community and Social Enterprise (VCSE) organisations. They are structured differently and are income generating.

We are part funded by the NHS and therefore subject to NHS regulations as a healthcare provider.

Many people are surprised that hospices carry out research!  We are really proud of this and you can read about it on the research section of our website.

Can people get in touch to find out more?

Yes!  We are open to more research opportunities and collaboration possibilities. You can find out about this on the Princess Alice Hospice website or by emailing research@pah.org.uk

What does your organisation do?

Intergenerational Music Making (IMM) is a national not-for-profit organisation which brings people of all ages together.  Through the power of music and creative health, we reduce loneliness and boost wellbeing amongst older people and young people, particularly for those living alone and minoritised communities.

IMM delivers intergenerational hubs, projects, research, training, youth social action, special educational needs (SEN), music therapy sessions in person and online services.

We offer services within churches, community centres, care homes, schools, youth groups, and four NHS hospitals in Surrey. Our offices are based in Manchester, London and Woking, Surrey.

How has your organisation been involved in research?

Within the intergenerational landscape we have been carrying out a huge amount of research and development across the housing, social care, education, health and youth sectors.

For example, the Intergenerational Housing Steering Group has enabled us to create a new intergenerational social value within the housing sector. We work with councils to provide input on the creation of intergenerational policies to sit within their systems.

We work closely with NHS England and Integrated Care Systems to implement an intergenerational framework into current systems. We have also engaged in qualitative and quantitative research with the University of Southampton and Royal Holloway University.

All of our projects involve collecting data using a variety of different methods including the PERMA model (Positive Emotion, Engagement, Relationships, Meaning and Accomplishment), UCLA loneliness scale, Warwick-Edinburgh Mental Health Scale and the WHO-5 well-being index.

Have you seen an impact as a result of your research?

In 2021, we launched the Together with Music initiative to improve health outcomes in collaboration with care homes, schools, VCSE, community assets and the wider community. Evaluating this work highlighted the success of the IMM framework, emphasising the need for innovative, person-centred solutions to address health gaps and promote holistic wellbeing.

Using evidence-based strategies and partnerships allows IMM to provide a blueprint for NHS Integrated Care Systems to enhance community health and resilience.

What are the barriers to getting involved in research?

Organisations working in silos, insufficient signposting to research opportunities, and a lack of education around intergenerational language and its understanding are significant barriers. These make it difficult to identify and collaborate on similar projects, leading to duplication of efforts and a fragmented approach.

What has worked well?

Our founder and director, Charlotte Miller, is trained as an Allied Health Professional music therapist. This has highlighted the importance of qualitative research in this area. Additionally, having a diverse and passionate team, along with dedicated volunteers, has significantly contributed to our success.

What would make getting involved in research easier?

A key part of what we do is working with volunteers. Adequate funding would enable us to incentivise them and give them the recognition they deserve for such a huge commitment of their time and dedication.

Where do you want to go with research?

Ideally, we would like to create a lasting intergenerational legacy across the UK. To do this, we have set up Intergenerational England. This works with sector leaders to advocate for intergenerational practise, research and policy.

Can people get in touch to find out more?

We encourage anyone interested in our work to visit the IMM website which has information about previous and upcoming projects and research.

You can also sign up for our mailing list, or email us directly at: info@imm-music.com

What does your organisation do?

Founded in 1922, Sight for Surrey are dedicated to enabling and empowering people who are deaf, hard of hearing, blind, partially sighted and deafblind. We offer support, services and advice to help that those we serve lead full and independent lives. We currently support over 8,000 people in Surrey.

How has your organisation been involved in research?

We have a long history of working with research and consider it necessary to best support the communities we serve and recognise the benefits ‘in kind’ to the operation of the charity itself.

Currently, we are working with University of Surrey looking at digital solutions for visual distortions with our CEO being a member of the programme working group. We have also worked with the University of Birmingham on children’s habilitation research.

We work with technology organisations to bring our communities together with professionals such as app developers for product user development and testing.

Have you seen an impact as a result of your research?

We have used research work and evidence to support contract negotiations. Research has benefits to the operations of our charity and provides more support opportunities for the communities we serve.

The outcome of the children’s habilitation research with University of Birmingham has been used by organisations like ours to ensure habilitation contracts meet the needs of vision impaired children up and down the country.   

What are the barriers to getting involved in research?

We regularly conduct our own insights through user and volunteer surveys. Funding and staff limitations have prevented us from developing impact measurements.

Applying for research grants can be intimidating when we feel we do not have the necessary expertise and experience.

What has worked well?

Working with academic institutions has been a good experience and our communities were reimbursed for their time in these studies.

We particularly enjoyed the University of Surrey’s approach to working with VCSE organisations which allowed us to share what would help the communities that we support.

Being treated as equals or higher in our interactions is a great enabler for getting good outcomes from research projects.

What would make getting involved in research easier?

As we do not receive any financial reimbursement for being involved in research studies, it costs us. It would be better if our contributions and that of our communities were recognised financially.

Working with disability consultants who have directly engaged with our local communities would add significant benefits to the results of research projects. We must make sure that our community voices are represented.

Can people get in touch to find out more?

For more information or to sign up to our newsletter please visit the Sight for Surrey website.

What does your organisation do?

The Surrey Minority Ethnic Forum (SMEF) was established in 2009 to represent the needs and aspirations of Surrey's growing ethnic minority population. It became a charity in 2013.

23.4% of Surrey's population are ethnic minorities, including white minorities, for example Ukrainian, and a large number reside in the top 5% of areas on the Surrey index of deprivation. 

SMEF's vision is to create a unified and diverse community with an active focus on improving the wellbeing of all in Surrey. Our mission is to engage and empower minoritised communities to work together to actively find solutions to the social and economic challenges they face.

We are an umbrella organisation, bringing together over 60 grassroots community groups and voicing the diverse views of minoritised communities in Surrey to strategic partners such as Surrey County Council, local and district councils, Surrey Police and the NHS. 

We work in the community running varied projects across the county to tackle social and economic inequality, reduce isolation and stigma, and improve mental and physical health. 

How has your organisation been involved in research?

We are very open to research. Current collaborations include work with Royal Surrey Hospital and National Institute for Health and Care Research (NIH)R on an inclusive Research in the Community Programme.

We have organised events with communities to inquire about the barriers that prevent minoritised communities from engaging with research.

We have presented at the University of Kent's Reaching Out programme, advising on better engagement with minoritised communities in research. We also deliver online training on cultural awareness.

Have you seen an impact as a result of your research?

A life-saving intervention was identified following a free liver scan at a liver health research event in early 2023, run in collaboration with Royal Surrey Hospital. This was part of the Research in the Community Programme.  The findings from this programme identified the reasons behind the lack of engagement from minoritised communities with health research in Surrey.

Several researchers from the Reaching Out event have since shared how they applied learning from this event in their work.

What are the barriers to getting involved in research?

Community groups want to come together for more than just research. We have given incentives to the community to attend research events like free liver (fibro) scans and NHS health checks. Organising and collaborating with research partners and coordinating incentives with teams requires resources that are not easy to access.

What has worked well?

Events like the liver health event had an extraordinary turnout. These health and wellbeing sessions allowed us to raise awareness of research as part of the event. We are looking to host future events on cancer awareness and women's health.

What would make getting involved in research easier?

It would be easier if more funding was available for our involvement in research programmes.

Can people get in touch to find out more?

Yes. Please visit the Surrey Minority Ethnic Forum website to contact us via email. Alternatively, you can write to us. Address details are on our website.

What does your organisation do?

Tourettes Action is a support and research charity for people with Tourette Syndrome and their families.

Tourette Syndrome is an inherited, neurological condition which can be visibly seen as tics, involuntary and uncontrollable sounds, and movements. We want people with Tourette Syndrome to receive the practical support and social acceptance they need to help them live their lives to the full. 

How has your organisation been involved in research?

One of the main aims of Tourettes Action is to support research and to seek better treatment and management of Tourette Syndrome via research into new therapies and potential cures. We want to see the lives of those living with Tourette Syndrome improved. 

We used to offer small levels of funding for researchers to apply for, however this has stopped since Covid-19. Between 2017 to 2019, we allocated £75,000 to research projects.

We do take part in non-funded research and welcome involvement from our population by applying on our website.  If successful, the research is advertised on our social media channels and website.  Any projects that we are currently recruiting members for are listed on the research section of our website.

During 2022/23, we supported 13 non funded research projects. During the current financial year (2023-24) we have supported nine projects. 

Have you seen an impact as a result of your research?

Research results are published on our website and shared on our social media channels and in our newsletter. We also ask researchers for summary of the research and its outcomes. 

What has worked well?

The community always get involved with our research.  Support and treatment is minimal for the condition currently, so the community see research as a positive way to support people with Tourette Syndrome. 

Where do you want to go with research?

We are the leading UK based charity working with families and individuals living with Tourette Syndrome and are well placed to promote research.

We are committed to ensuring that research can make a real difference to all people affected by Tourette Syndrome. We have a library of research projects, both current and previous, which demonstrates the importance of research. 

Can people get in touch to find out more?

Please visit our Tourettes Action website to find out more about Tourette Syndrome. We have research guidance that covers how to recruit participants, writing research summaries and how researchers can engage with the community.

What does your organisation do?

Formed in 2008, Woking Strokeability is a registered charity that provides support, aerobic, aqua aerobic exercises and social events for stroke survivors and their carers. We also offer support to those with similar disabilities from brain damage however they may have occurred.

The organisation is totally run by volunteers and all of our trustees are stroke survivors or carers.

How has your organisation been involved in research?

We provide subjects for interviews and follow ups with research projects.

We have contributed to research projects run by University of East Anglia, North West Surrey Neuropsychology Squire project, the Stroke Discharge team at Frimley Park Hospital, the Translational Neuropsychology Laboratory at the University of Oxford, Ashford and St Peter’s Hospital, Stroke Association and the National Council for Voluntary Organisations (NCVO) Research Team.

We help with the dissemination of information to our membership whenever presented with information likely to be of benefit.

What are the barriers to getting involved in research?

For us, information technology (IT) literacy and access to IT are a real barrier to involvement in research. There is an assumption in the NHS that everyone has access to Microsoft tools such as Outlook, Teams and Word. The majority of our membership use Zoom on iPads or similar and need documents as PDFs not Word.

Can people get in touch to find out more?

Please visit the Woking Strokeability website for more information.