A more local approach

Opportunities for Participation, Involvement and Engagement

Why a more ‘local’ approach to research is beneficial to patients, carers and the public.

- a personal view from Derek C Stewart

There is always change in the NHS as it seeks to develop better treatments, care and services to improve patient experience. High quality systematically reviewed research plays a significant part in identifying and pursuing the questions that lead to such improvements.

As organisational changes take place across the NHS and the management of research develops, what might a more ‘local’ approach mean for study participation, active involvement and wider engagement?

Why does it matter?

I not defined by my illness even though it intrudes in many aspects of my life. I come before the label ‘cancer’. I am not keen to be kept in a ‘cancer box’ and only told about or involved about that type of research.

I live and access most of the services I use within 15 miles of where I and my friends and immediate family live.

I would like to know more about a much wider variety of research that I could easily access in my local clinic or hospital, e.g. I would be interested in research into psoriasis, osteoporosis, mental health, arthritis and old age.

I would willingly get actively involved with any researcher to prioritise areas for research identify the right questions, plan and design the study and all other parts of the process. Because of my work with the Clinical Research Network I am particularly interested in how get studies up and running in the NHS on time and meeting the targets that have been set.

However, most of the understanding, knowledge and the skills I have gained in trying to cope with my illnesses and conditions are shaped, for the most part, in the visits, consultations and interactions with those local services and support groups. The internet has become an increasingly important tool in gaining information and advice but I still like to meet people.

So, why am I so defined by my ‘cancer experience’? As one website has it: My name is not cancer! 

Of course, I want to see research on head and neck cancers and into the other two hundred plus cancers. I also want to see into other conditions that I, members of my family and friends have or might develop.  I want to see research that looks at the causes of illnesses, prevention, treatment, care and the services as well as living with and end of life care.

I want NHS researchers to work ‘for’ patients. I mean working towards better experiences for patients and users of services. I don’t mean that we employ the NHS researchers yet it is our money.

Evolution - The advent in England of Academic Health Science Networks (AHSN) & Centres (AHSC) alongside an evolving National Institute for Health Research - ClinicalResearch Network (NIHR-CRN) means there is a real sense of a more local focus in the planning, management and delivery of research.  

If you place this local focus together with the changes in the Research Excellence Framework for UK higher educational institutions then there are genuine and exciting opportunities to be gained for the public, patients and carers.

Academic Health Science Networks - The creation of Academic Health Science Networks [AHSN] is one element of an approach to transform health outcomes and the delivery of healthcare in England, bringing together the local National Health Service [NHS], Higher Education Institutions [HEI] and Industry to focus on improving the identification, adoption and spread of innovative health care across the network. The East Midlands AHSN has produced a MAP showing the 15 proposed AHSN areas.

NIHR CRN - The evolving NIHR CRN is now consolidating the links between the different topic and other networks by developing a more unified structure, building on the successes to date.

The revised and more integrated structure will be easier for researchers, the public and other stakeholders to understand and use. It will also help make national-scale improvements to our services. http://www.crncc.nihr.ac.uk/evolving_the_network/transition_programme_homepage

Research Excellence Framework (REF) – The REF provides accountability for public investment in research and requires researchers to produce evidence of the benefits of this investment.

This is referred to in the ‘IMPACT’ statement that has to demonstrate reach and significance. Researchers are asked to go ‘beyond the usual’ patient and public involvement, so new openings could be created for active involvement.

Collaboration – These developments are all reliant on strong collaborative and cooperative efforts by all concerned including members of the public asking about research opportunities in line with the NHS Consititution.

In many areas there are effective relationships between the different elements of the National Institute for Health Research and other stakeholders. The appointment of Simon Denegri as National Director for Participation & Engagement in Research at provides scope for further coordination. The focus on celebrating lots of different examples of good practice on International Clinical Trials Day being one example.

LOCAL ACCESS & OPPORTUNITY

Increased participation

A more locally responsible and managed collaboration between the NHS, AHSNs, HEIs and all parts of NIHR can result in increased participation in research. Local priorities can be identified. Studies can be run for more illnesses, conditions and diseases that meet the demographics and needs of people living and working in the area.

It becomes possible to have a joined up approach to informing the public and local media about research opportunities. Local media like local stories. The ‘ambassadors programme’ by NIHR CRN already provides support to people who are keen to speak with local media about the value of research in their lives.

A local ‘port of call’ can be created for people to inquire and gain information about signposting for research opportunities in line with the NHS Constitution. An advice line could additionally inform people about getting actively involved with research and encouraging better engagement.

Greater Involvement

A more local approach could mean that it is easier to identify the context and purpose of the involvement e.g. getting involved in design of research through the Research Design Service, CLAHRC and or NIHR Evaluation, Trials and Studies Coordinating Centre (NETTCC); involved in the delivery through the Clinical Research Network, etc. Of course there will be some crossover work but there is a better chance to meet, inform and partner with researchers in the local environment. A greater chance of building mutual relationships, trust and skills built between public and people who work in research in local institutions. Local is more likely to mean less travel to become and keep being involved.

Local communities, self-help and support groups have the opportunity to engage with individual topic research groups. Some areas have already brought these groups together. The North West People in Research Forum is a great example of collaborative thinking and pooling resources. The Primary Care in Manchester EngagementResource (PRIMER) provides another wonderful example.  


People in Research - West of England have also shown initiative in this area. Pen-CLAHRC are hosting a Conference in November 2013.

Leicestershire, Northamptonshire & Rutland - Research Engaging with Patients & PublicLNR- REPP and the development of a Nottingham, Derbyshire & Lincolnshire NDL REPP both illustrate how those working locally in research are coming together with the NHS. The North Trent Consumer Research Panel is a good example of a topic focused group.

Involvement encourages a more people-centred approach. The lay voice and representation (whether patient, carer or public) on Boards and committees can provide a powerful reminder of purpose and direction of travel.

Further cross-NIHR and other collaborative approaches could easily promote and offer places for more active involvement at the different stages of research leading to better recruitment.

There is greater scope at a local level for offering collaborative and coordinated workshops, events and meetings for people to learn and development knowledge and skills about involvement.

Wider Engagement

Local has the added value of engaging in the communities where people live and providing a mixture of information on both general and specific research for those communities. It is possible to set up calendars of regional events with newsletters along with other communications.

The benefit is that research increasingly becomes an important and valuable part of the patient pathway in all of our local NHS services. This could become a right of every citizen.

A citizen based approach means greater opportunities to learn from each other. There will still need to be topic focus but by working more closely together we can all be more informed about our own health and about how to improve research and services.

LOCALLY MANAGED

The phrase ‘locally managed’ should mean ownership and responsibility that builds on local knowledge of cultural and socio-economic population needs. The people who really understand those needs are those with experience of receiving services and those who might need them in the future.

Many of the existing organisations who are evolving into these new structures have a rich understanding of geography and the NHS. They already know where research is strong and the areas that need further development. The changes should provide space and flexibility in addressing those needs.

For patients and the public wanting to take part, get involved or just hear what is happening, a local framework will be helpful and clearer.  This should equally apply for researchers and managers with the formation of a coherent structure to engage and discuss. Research expertise and their knowledge of the research is in many respects based on clinical or service delivery.

FOR THE PUBLIC

Too often, the word ‘research’ comes after the diagnosis of an illness, condition or disease.

The reason these changes should take place is that…

·       More people knowing about research and taking part in studies

·       Research is a normal part of care pathway

·       Better evidenced based treatment, care and services