Sunday, 19 May 2013


This blog reflects the second workshop being held on this topic for the Joint Research Office a great partnership between UCL, University College London Hospitals NHS Foundation Trust, and Royal Free Hampstead NHS Trust. The course details can be found here and it is taking place as part of International Clinical Trials Day - ICTD.

This is additional module and my last for the Building Research Partnerships workshops supported by Macmillan Cancer Support.

The notes here are directed mainly at patients, carers and members of the public. The previous workshop and blog looked more at supporting researchers. Thanks to Ros Yu and Madeleine Stewart for all their help.

Involving the Public in Study Recruitment

As patients, carers and members of the public we are increasingly invited as contributors to the research process, actively involved in the design, delivery and dissemination.

This movement for change has helped with the push to get more people taking part as research participants. In cancer this has increased from around 1 in 25 people taking part in studies in 2001 to almost 1 in 4 more recently.

For those of us who become actively involved we would consistently state that the earlier we are included the likelihood of better research.

How might we best improve RECRUITMENT to research studies?

It is possible to identify three areas where wisdom can be brought to bear - that unique experience of being the patient, family, friends and colleagues OR the external perspective as a member of the public.

       SENSE – whether what is proposed matches what’s being recruited – providing the reality check that asks if the Emperor has no clothes.

       RELEVANCE – whether the study seems appropriate to patient experience and sensitive to their needs - considering the time, place and burden of taking part.

       LANGUAGE – whether the way the study is promoted is understandable – looking at the  both the verbal explanation and the Patient Information Leaflet

Roles and responsibilities

First and foremost we must be clear about the context for involving people, why it is taking place and what is expected. The following questions are those we should be asking of each other...


·       What am I doing here?
·       What is wanted/needed?
·       What is the task in terms of recruitment?
·       How long will it take?


·      Will anything happen as a result of our discussion?
·      Will any changes be applied to this study?
·      What learning will be applied to future studies?
·      How are the findings being fed back to the researcher and to NIHR?


·       How and when will we all be informed of progress?
·       Is the evidence of involving people being recorded?

Some QUESTIONS to explore around Recruitment

What might we look for Sense, Relevance and Language in HINDSIGHT?
Questions that help us reflect and understand why people chose not to take part in the study

·       Do you clearly understand the study?
·       How relevant to patient need does it seem?
·       Was the language used in the patient information leaflet appropriate?
·       Were the targets unrealistic (ie the numbers expected and the time it took)?
·       Was it a study that required extra visits to a clinic (burden)?
·       Were people just not interested in the topic?
·       Were there other problems associated with this particular study?

What INSIGHTS were offered earlier for Sense, Relevance and Language
 Questions that explore the preparatory planning and design stages of the research

·       What does it say in the section on Patient & Public Involvement (PPI) in the application form?
·       Is there any evidence that the researcher has talked to patients with this condition? 
·       Have patients been actively involved in design and development of the study?
·       Is there a plan for actively involving people throughout the study?
·       If so, then why has it failed to recruit?
·       How lay is the lay summary?

Thinking about the INSIGHTS we might apply in the Future

LEARNING from Experience
Sense, Relevance and Language in the future - FORESIGHT
Considerations for helping researchers at an earlier stage

To think 'Patient'
To find out about patient self-help and support groups - especially on social media
To know about charities and other national/international patient organisations
To understand the continuum of patient involvement from consultation to partnership
To develop and sustain a plan for effectively involving the public


As patients and/or carers, it is of value to think far beyond our own experience and imagine what the public - those patients of the future might want/need. It is worth thinking about how technology and access to smart phones and tablets have dramatically increased in recent years.

So, how are might we use technology for Study Recruitment...

·       Informing People about Research The recent consultation on the UKCTG provided some useful information but we need to find other means of using U-Tube, Facebook, etc.

·       Using Technology for Recruitment Expressions of interest, eligibility, registration and capturing data about numbers interested, numbers recruited. Patient information leaflets could be given as an App to address a paperless concept to research.

·       Maintaining the Delivery of Studies Informing participants of appointments, compliance reminders, gathering patient experience, monitoring patient responses to trial treatments and safety reporting.

Thursday, 9 May 2013

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.

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.


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.


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.


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

Wednesday, 8 May 2013

International Clinical Trials Day

International Clinical Trials day - 20th May

This is a great opportunity to get people talking about and involved in research. Start a conversation with people!

OK to ask campaign resources:

The OK to ask campaign materials are now available to order online from

These include:

OK to ask campaign posters
OK to ask pull up banner
Additional OK to ask campaign leaflets*
Customisable OK to ask supporter poster**

*Please note: Organisations/Trusts are able to order a maximum of 100 leaflets each at no cost via email to Additional leaflets can be purchased via the online system above
**Available from the online resource from Monday 6 May

We have also created an information card which will help medical professionals point patients in the right direction if they are asked about clinical research. These will be available to order from us for free from Monday 6 May, just send us an email with how many you need to

If you have any questions about resources please contact

OK to ask website:

The website is also now live at! Please point people towards this site wherever you can.

Thank you to all of you that have already shown your support for the campaign by sending us your pictures with the OK to ask campaign badge. You can see the pictures at

There’s still time to show your support by sending your photos to us via Instagram using the hashtag #NIHRoktoask, via our facebook page or by email to You can download the badge here.