More than quit rates - our smoking research was about complexity, trust, and real voices

Posted by Angela Rodrigues, Associate Professor at Northumbria University, and co-lead of the Fuse Behaviour Change Cluster, and Team

By the time we wrapped up our final interviews, we felt a mix of pride, exhaustion, and curiosity. Pride because we’d managed to complete a complex mixed-methods evaluation across four pilot sites. Exhaustion because, well, public health research never seems to run smoothly, and we had a few recruitment bumps along the way. And curiosity because we still weren’t sure how all the pieces would fit together. This was a mixed-methods evaluation of a 20-week smoking cessation service in the North East & North Cumbria.

The context: why this service mattered

When we first got involved, the idea was simple: evaluate an enhanced stop smoking service designed specifically for people living with severe mental illness (SMI). People with SMI experience stark health inequalities. On average, they die 15-20 years earlier than the general population, largely due to chronic physical health conditions rather than psychiatric causes. Smoking is a major reason for this health gap, and it is something that can be changed. Yet many tobacco dependence services do not adequately meet their needs.

The service offered more support than the standard provided by the local council, combining behavioural support with medication-assisted treatment over 20 weeks. It followed a ‘cut down to quit’ model, and aimed to be person-centred, flexible, and responsive.

Our approach: mixed methods and lived experience

We used a mixed-methods approach, including quantitative analysis of recruitment and outcomes, surveys with service providers, qualitative interviews with both staff and service users, and a review of Smokefree Taskforce documents. We started with a well-defined plan, but the process taught us to embrace flexibility. Recruitment was slow. Referral pathways shifted. Data systems didn’t always talk to each other. And finding service users willing to be interviewed was harder than we expected.

One of the most rewarding aspects was working with our Lived Experience Advisory Panel (LEAP). They helped shape our protocol, refine our interview questions, and interpret findings. Their input reminded us why we do this work. It’s easy to get lost in methodological frameworks, but the real insight often comes from lived experience. One LEAP member words stuck with us:

“You need to understand what it’s like to be told to quit smoking when smoking is the only thing that gets you through the day.”

What we found: complexity at every level

The Behaviour Change Wheel framework (figure 1) helped us make sense of what was happening on the ground. Service providers used a range of strategies, including medication, leaflets, nicotine e-cigarettes, planning, and social support. Most felt capable and motivated to deliver the service, but some found it more harder than expected. Complexity was a recurring theme, as illustrated in one advisor words:

“It’s not just about smoking, it’s about everything else going on in their lives.”

Figure 1: Visual map of key themes identified in our study

We also saw how broader systems shaped delivery. Some sites had strong links with primary care; others struggled. Data recording was patchy. Staff wanted more training, not just in smoking cessation, but in understanding mental health complexity more broadly. And while the service was designed to be flexible, that flexibility sometimes created confusion. Who was eligible? How long should support last? What counted as a successful quit?

For service users, the benefits were clear: 

• better physical and mental health
• financial savings
• fewer unpleasant smells
• and fewer side effects than expected.

But staying engaged was tough. Motivation fluctuated. Life got in the way. Participants reminded us regularly that behaviour change doesn’t happen in a vacuum:

“I wanted to quit, but then my meds changed and everything fell apart.”

The challenge and value of qualitative work

Personally, we found the qualitative interviews both the most challenging and the most illuminating part of the process. Some participants were open and reflective; others were more reserved and required extra support and reassurance to feel comfortable speaking openly, particularly service users. We learned to be flexible in our approach, arranging a casual phone call with service users to build a rapport prior to the interview.

Despite the difficulties recruiting service users, once they were engaged in the interviews, all were eager and willing to share their experiences. We learned that it is important to develop a level of trust with service users, and that patience and empathy can encourage openness and in-depth understanding.

There were challenges too. We had hoped for more interviews with service users, more consistent data, and deeper engagement with those delivering the service. In particular, connecting with service deliverers proved difficult, largely due to the time lag between service implementation and the research evaluation. By the time we began our research, staff had moved on, memories had faded, and priorities had shifted, making it harder to capture a full and accurate picture of delivery. But public health research rarely hands you a neatly packaged story. What it does offer is insight into systems, into people, and into the messy, unpredictable reality of trying to improve lives.

Why it worked: partnership and collaboration

Looking back, we think the study worked because it was grounded in genuine partnership. The Smokefree NHS strategic team were incredible, collaborative, responsive, and deeply committed to making the service work.

We built relationships with service providers who shared their experiences openly, with LEAP members who challenged our assumptions, and with service users who trusted us enough to talk. Within our research team, we supported each other through the inevitable ups and downs. That collective effort, across roles, organisations, and lived experiences, is what made the project feel meaningful.

This experience has already shaped how we’re approaching future projects. Next time, we’ll go in with clearer expectations, more flexible timelines, and a deeper appreciation for the emotional labour involved, not just for us as researchers, but for the people we’re working with.

Researching smoking cessation in people living with severe mental illness isn’t just about measuring quit rates or evaluating service models. It’s about recognising the complexity of their lives, earning trust, and ensuring their voices shape the research process. More than anything, this project reminded us that we, as researchers, must be more attuned, more patient, and more willing to adapt.

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About the authors:

Dr Angela Rodrigues, Associate Professor, Northumbria University, and co-lead of the Fuse Behaviour Change Cluster

Dr Lauren Hoult, Associate Lecturer, Researcher in Behaviour Change & Public Health, Northumbria University

Prof Katie Haighton, Professor in Public Health and Wellbeing, Northumbria University

How our ‘test & learn’ prototypes are strengthening Social Prescribing

Posted by Ang Broadbridge, Head of Implementation at Ways to Wellness, on #SocialPrescribingDay

Evaluation is often something that happens at the end of a project, but what if we built learning into the process from the very start?

At Newcastle-based charity Ways to Wellness, we believe that embedding a culture of learning from the outset helps social prescribing link workers share real-time insights, refine approaches, and ultimately improve support for the communities we serve.

One area where this model has been used is in maternal mental health

Co-designing for impact

A core part of our work is connecting with local communities to shape and refine prototypes that align with our mission:

• Improving health and wellbeing
• Tackling health inequalities
• Reducing demand on NHS services

To ensure our link workers could share learning, develop key messages, and highlight gaps in services, we adopted the Learning Communities model. As described in the Learning Communities Handbook, these are:

"A group of peers who come together in a safe space to reflect and share their judgements and uncertainties about their practice and to share ideas or experiences to collectively improve."

To embed this approach into recruitment and training, we:

• Included an expectation for link workers to actively engage in Learning Communities
• Encouraged participation in ‘test and learn’ approaches
• Provided ongoing support and facilitation to foster a sense of ownership and belonging.

This approach helped link workers collaborate across different host organisations, spanning locations across the North East and North Cumbria.

Extending learning into maternal mental health

One area where this model has been used is in maternal mental health. After eight months of Learning Community meetings, we expanded this approach through a series of external learning events. These events:

• Shared early insights from our maternal mental health prototypes
• Brought in new partners to co-develop next steps
• Strengthened cross-sector collaboration

A key learning was that while social prescribing is well known in GP practices, it was midwives and health visitors who played a crucial role in referring parents to our prototypes - roles that hadn’t previously collaborated with link workers.

By opening up new referral pathways, we helped develop best practices for integrating link workers into maternal healthcare settings.

Turning insights into action

Our Learning Communities aren’t just discussion spaces - they drive change. Link workers use them to:

• Identify barriers in accessing social prescribing
• Test new ways to connect people with support
• Share insights at external events and policy discussions

The impact has been tangible. For example, after testing different approaches, some link workers are now based in health appointment clinics - an innovation that has improved system-wide connectivity and access to services.

Why this approach matters

By embedding a culture of continuous learning, we are:

• Strengthening partnerships across health and care sectors
• Ensuring services are designed with communities, not just for them
• Maximising the impact of social prescribing

At Ways to Wellness, we believe that the voluntary sector, healthcare services, and community organisations must work together to tackle health inequalities.

That’s why we’re committed to testing, learning, and adapting - so that social prescribing continues to evolve, improve, and reach the people who need it most.

Find out more at: waystowellness.org.uk

Image credits: Ways to Wellness Limited company number: 08798423

Summer school at home: Learning online and adapting research to reach the ‘hard to reach’

Posted by Emma Adams, Newcastle University, and Jo Dawes, University College London, NIHR School for Public Health Research (SPHR) Pre-Doctoral Fellows

Starting a new post in a new institution just as a global pandemic and lockdown sweeps the UK is not how we envisaged beginning our NIHR School for Public Health Research (SPHR) fellowships. When our training and development allowance letters came through initial thoughts were to delay booking any training until it was possible to attend in person. However, as time passed, it became clear we may be waiting some time. This realisation coincided with hearing about the “Applied Research Methods with hidden, marginal and excluded populations” course run by Nuffield College, University of Oxford. The course is usually a weeklong residential summer school, but this year it was offered online. The idea of spending five full days sitting at home doing online learning seemed a disappointing second best to a week in Oxford and somewhat limited our enthusiasm. However, these concerns were misplaced. We could not believe how engaging the course was, with tutor Andrea Rossi doing an excellent job of varying the activities, keeping us captivated and packing the course with relevant, interesting, and interactive tasks. 

For this ‘participatory research method’ we were given 5 minutes to create a map of our childhood community, using items we could easily reach. The task was designed as an ‘icebreaker’ activity to start a conversation about our childhoods. Using available objects, rather than drawing, takes away any pressure interviewees might feel about their aptitude for drawing. This activity could be adapted in rural communities using found items outside. Once my map was created, I talked about the map and why I had highlighted specific aspects of my community - this is the point at which ‘data collection’ might start.

Beginning with what makes a population ‘hard to reach’, we were armed with the linguistic tools to define whether our population was hidden, marginal, elusive, rare, excluded, or blurred (see Table 1 for breakdown). By breaking down populations into these different categories, we were better able to understand approaches for reaching and involving them in research. People experiencing homelessness may be perceived as ‘hard to reach’, when in fact they might just be elusive (purposely hiding or not reporting). If we, as researchers, recognise individuals may be making a conscious decision not to report, then perhaps we need to build a foundation of trust. The responsibility a researcher has to find ways to reach the ‘hard to reach’ was one of the most important things that we learned. 

With optimism that the virtual learning might not be as onerous as we had feared, we jumped into three days of research methods (both qualitative and quantitative). Challenging us to approach every technique from both the researcher and participant perspective, we were pulled out of our comfort zones and into creatively mixing research techniques. Opportunities to transform recruitment strategies (such as respondent driven sampling into a data collection tool for analysing social networks were explored. Learning to make the interview experience more interactive challenged our preconceptions of data collection - ever thought about asking a participant to reconstruct an important/memorable place with only items in their kitchen? Having experienced this first-hand, we both agree it was a great facilitation tool as a participant and researcher. The breadth of material in the course left us feeling that it was a week well spent, despite the initial apprehension and sitting at a computer in the blistering summer heat.

As a result of attending this course, we have already adapted how we approach our research activities. Jo was struggling to define a ‘hard to reach’ population in a patient and public involvement (PPI) paper. The course provided real clarity about this topic and helped her confidently address this definition in her writing. Emma was trying to find a way to approach recruitment and the re-shaping and framing of populations has provided me with optimism about my future recruitment strategy.

There is no doubt that by learning online instead of face-to-face, we really missed out on networking opportunities with our course peers - nothing could really replace a good natter over coffee. Conversely, the online nature of the course really opened up the cohort - we were learning with people sitting in their homes in England, Wales, Switzerland, France and Germany, while our tutor taught us from his apartment in Bangkok. Perhaps without being online, we would have been a far less international cohort. After undertaking this excellent course, we certainly feel more positive about online learning, how engaging it can be and how - in these uncertain times - it is important to not simply wait for face-to-face learning to return as the norm. The variety of learning and research activities we used online challenged us to translate so much of what we usually do face-to-face to our ‘virtual classroom’. As a result, we developed skills in how to adapt our current methods of communication in our research.

Our take home messages from the course:

1. Online research and learning can work well if you are creative and willing to be flexible.
2. Researchers must consider reasons some populations are ‘hard to reach' (are they rare, hidden, elusive, marginal, excluded or blurred?).
3. When you recognise WHY a group of people are ‘hard to reach’, you must adapt your research methods to better reach them.
4. Through mixing methods/data sources you can strengthen your understanding of ‘hard to reach’ groups.

Too stressed for words? Involving those experiencing stress in research (part 2)

Posted by Fuse members Sonia Dalkin, Lecturer in Public Health and Wellbeing, and Natalie Forster, Senior Research Assistant, Northumbria University

Following on from our post last year on National Stress Awareness Day, and in light of the current media attention paid to welfare benefits, we wanted to take the opportunity to reflect on the difficulties of involving those experiencing stress in research. This is in relation to our recent recruitment efforts for a realist evaluation of the impact of Citizens Advice (CA) on health.

"Stress" by Bernard Goldbach

CA provide independent, impartial, confidential, and free advice to everyone on their rights and responsibilities. This includes advice on debt, benefits, employment, housing and discrimination. Throughout the study, a recurrent theme of stress has been evident. The links between stress and health are abundant. This stress lens therefore formed the health focus of the study, overcoming the difficulties of recording the variety of outcomes leading to health improvements and capturing changes to health which would only be evident beyond the study timescale. Determining if and how CA services reduce stress should enable us to project the potential health impact of CA.

We carried out a mixed methods evaluation, detailed here. This required CA clients to complete a questionnaire when they first accessed CA and six weeks later. CA staff collected the questionnaire data for the research. Twenty-seven clients were also invited to participate in interviews. CA staff were initially apprehensive about data collection, due to clients often being in crisis and therefore having extremely high levels of stress.

Initially, recruitment was very slow. This was due to a variety of factors, some of which could be related to stress:

• Some clients were too stressed to engage in completing the questionnaire at Time 1 (initial contact with CA).
• CA staff found it extremely difficult at times to get in contact with clients at Time 2 (six weeks later). This was often due to their own heavy workload but also due to client reluctance to answer calls from unknown numbers (CA has a withheld number) and client wishes to move on with their lives once issues had been resolved.
• Clients were reluctant to participate in interviews because they were too stressed and had often been let down by other organisations when disclosing personal information. 
• Some clients also suffered from severe mental health issues which meant they found the prospect of an interview very stressful. 

To overcome these barriers, several strategies were employed. These were developed collaboratively with CA, and through engagement with the project steering group.

• We worked with CA staff to develop a bespoke questionnaire, meaning that CA staff felt confident that it was not over burdensome for clients. This included shortened versions of questionnaires where possible. Questionnaires were also carried out by a client’s named CA contact who they trusted and would be more comfortable disclosing information to.
• We ensured that CA staff had a detailed understanding of the research aims in order to explain the research clearly to participants and gain their trust in the research. They could therefore highlight the importance of completing the Time 2 questionnaire to participants. When participants understood that the research aim was to show the ‘good work’ CA do, as opposed to focusing on their issues, they were more likely to engage. 
• Offering interviews at a client’s home or via skype, in addition to the original offer of interviews at CA Gateshead allowed for participants to be in a location where they felt most relaxed.
• Offering clients the option of having their named and trusted CA staff member attend the interview for the first 10 minutes allowed this trusting relationship to be transported to the interviewer.
• Offering clients the option of having a relative or friend attend the interview also helped to put the client at ease. In one case, the client gave permission for their partner to do the interview on their behalf as they had been highly involved in the process of interacting with CA.

These improved strategies led to the collection of 261 Time 1 questionnaires with a 92 per cent follow up rate, and 23 clients participating in interviews.

Although CA staff were initially apprehensive about data collection, working in partnership and being flexible with recruitment strategies overcame this. It is important to provide all clients with the option of participating in research; presumptions of non-participation remove client autonomy which is unethical. In this research project and all research with people experiencing difficult circumstances it is essential to involve - where possible - any potential participants, the organisations working with clients, and experts, to find the most fruitful recruitment strategies.


The CA research team also consists of Monique Lhussier (Reader in Public Health and Wellbeing); Philip Hodgson (Senior Research Assistant) and Sue Carr (Professor of Public Health Research), who have all read and contributed to this blog post.

The study ‘Exposing the impact of advice services on health and inequalities’ is funded by the NIHR School for Public Health Research (SPHR), via the Public Health Practice Evaluation Scheme (PHPES). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

Links:

• More information about this research is available on the NIHR SPHR project pages on the Fuse website.
• Fuse research brief: How do Citizens Advice Bureau services improve people’s health?

Photo attribution: “Stress” by Bernard Goldbach via Flickr.com, copyright © 2011: https://www.flickr.com/photos/topgold/6273248505

Working across boundaries

Posted by Scott Lloyd, Health Improvement Commissioning Lead, Redcar & Cleveland Borough Council

 

**********************************

Dear Academic, 

For the past nearly three years, we’ve been running this wonderful public health intervention in our area. It’s seen 50,000 people and everyone says how great it is. We’d now like you to come in and evaluate it. Oh by the way, there’s only two months of the project left and they’ve only got a few measures collected from past service users. 

Kind Regards,

Public Health Officer.

**********************************

Sound familiar? These instances have happened in the past and are unfortunate and I can’t promise that they won’t happen in the future. However, the frustrations occur both ways. Let me explain.

Research trials – especially large randomised controlled trials – cost a lot of money. They are designed based on the latest research to provide a degree of confidence that the outcome will add to the evidence base of what works. Even if they don’t work, it is still so very, very important that the findings are published and shared (Prof Richard Parish once suggested in a meeting that there should be a Journal of Public Health Interventions that don’t work).


Open door policy (and practice)

My frustration is when I hear about trials that have taken place and have failed to recruit participants in a timely manner or at all – this is one area where us mere commissioners and practitioners can help, especially now that many of us are working in Local Authorities with an even wider reach via colleagues in other departments. We can open doors that may be closed to you.

A few examples:

• Are you conducting a trial with adults? Would you like easier access to potentially over 130,000 people in North East England? Through the medium of the North East Better Health at Work award, in 2014 colleagues worked with employers who combined to employ this many people. These colleagues and the Workplace Health Advocates that they work with could have been helping you.
• Want to work with schools? Many of our colleagues – such as Healthy Schools (in some areas), School Sport Partnerships, Active Travel Projects and Local Authority education colleagues – already have contacts. Your information coming from them direct to their contacts will always be better than you contacting schools cold.
• Communications teams in Public Health England, Local Authority, Clinical Commissioning Groups, NHS Foundation Trusts and elsewhere have a role too. They know the local media. They know our local populations. They have social media accounts with 1,000s or more of “likes” or “followers”.

There are examples where partnerships have worked really, really well. Look at “New Life, New You” in Middlesbrough. Also LiveWell; a number of colleagues have been involved in this during the development and implementation stages and the intervention team are close to recruiting the required number of participants.

 

My point is – get in touch early as I’d like to think that we can help. Senior researchers please advise your PhD students of these opportunities, especially those new to the North East. Fuse – especially AskFuse and the Knowledge Exchange theme – is breaking down barriers.

 

Even if we can’t help, it’s always good to know what is going on in our local areas (it can be embarrassing when we get asked about something that we know nothing about).

 

I can’t promise to change the world and that a joint approach will always work; but basically, as long as your intention is to improve health – I’m interested.

Recruitment etiquette

Posted by Lorraine McSweeney

Throughout my short experience of the research world, one of the most frequent laments I’ve encountered from fellow researchers and presenting academics is the difficulties surrounding recruitment. Issues include disseminating the study information to the relevant populations, encouraging people to ‘sign up’, attendance/participation and retention. However, have you ever stopped to consider whether your etiquette may be partly to blame?

Trying to be a supportive colleague I frequently ‘advertise’, hand out leaflets or inform by word of mouth any studies which I think certain individuals would be suitable for, or interested in participating. However, without wishing to admonish researchers who are pressed for time or who are inundated with several thousand interested participants (we wish); do you reply to enquiries? Yes, that simple act of returning a phone call or an email! One of the frustrations reported back to me (including a study I applied for personally) was the rudeness of not receiving a reply or even an acknowledgement.  Perhaps the person applying is not suitable for your study but please could you recognise their interest, courage and time taken to apply? 

After all it is only good manners and you never know the interested party might apply for another study for which they are suitable.

Are we asking the right question?

Posted by Bronia Arnott

Recently I wrote about using twitter to recruit participants for a research study and how others said it couldn't be done. But were they asking the right question? Should they be asking if it SHOULD be done?

When I tweet to my followers on twitter I am sending information out to people who are like minded individuals. They probably follow me because they share some of my interests and probably because they like me have been caught up in the fallout from the weapon of mass distraction that is the Internet. So are these the kind of people I should be trying to recruit for a research study? A large proportion of them have a PhD and many work in academia (and I know how strange academics can be!). Even if they don't fall into those categories they tend to be those interested in mental or physical health, quite well educated, or my friends - which might not be very inclusive!

Reduce, reuse, retweet

But before I shoot down my research paper with the biased sample bullet let's take the finger off the trigger for a moment. Of course those things are true of my followers, but what about the followers of those who re-tweeted (RT'd) my requests for participants? Their followers may be more diverse than my own - especially those such as local radio stations who kindly RT'd. So, in theory, the further the RT was RT'd the more likely I was reaching people who were not that similar to me.

Taking another step back from the big red button, what kind of participants did I want to recruit? Well I was actually looking for adults of working age who regularly commute and own a smartphone – so if twitter users tend to be adults of working age who regularly commute and own a smartphone then perhaps that isn’t a problem?

However, while most twitterers are lovely (and recruiting this way allowed me to meet some of them who I may not otherwise have had the opportunity to meet) they are clearly different in many ways to those who don’t use twitter. Therefore while I do think people can and should recruit via twitter I don't think it should be the only method of recruitment. Unless you want to measure the effect of the weapon of mass destruction that is the Internet, then go ahead.

But enough about what I think, what are your thoughts?

They said it couldn't be done…

Posted by Bronia Arnott

Recently I needed to recruit some participants for a user engagement study that we were organising as part of our research. I had had in my mind for a while that I would probably try to recruit some participants via twitter. Anyone who knows me knows that I am a twitter advocate. I had been thinking about this idea for a while. However, when I mentioned my plan to others they said that they didn't think it could be done...

The Incredulity of Saint Thomas, by Caravaggio

Due to some unexpected delays on the project I realised that my brief recruitment timescale was going to coincide with moving house and my daughter starting preschool. I negotiated to have time off as long as long as I could recruit participants while I was on leave. The appeal of a twitter recruitment drive became even more appealing. I thought maybe I should probably have a strategy (or maybe I was just procrastinating) so I checked out what times of the day were most likely to get Re-tweets and put my academic writing skills to the test trying to summarise the user engagement studies into the 140 characters allowed by twitter. I also thought about targeting specific people who I followed or who followed me (or our research project twitter account) and asking them to Re-tweet to their followers. "Shy bairns get nowt" and all that.

Soon the RTs were coming in and so were the hits on our project website. Slowly but surely the sessions filled up. So were the doubters right? It wasn't as successful as I would have liked but I think there were a few reasons for that: we had very specific inclusion criteria, limited time, no funds, and for some of the time I had no Internet access (the provider who messed up not once but twice will remain nameless).

I think in the end researchers probably can recruit using twitter. Whether they should or not is a different question...

Routine Secondary Data

Posted by Lynne Forrest

We all know what a nightmare it is trying to recruit participants for research studies. So if you only have to get hold of some routine data that’s just sitting there, well, that’s going to be much simpler, isn’t it? You’d think....

The plan for my PhD was to look at inequalities in cancer care by linking cancer registry and Hospital Episode Statistics data for lung cancer, and also linking to audit data. This is routine data that has already been collected and so I naively assumed it was just a case of getting ethical approval to access the data, finding someone to cobble the data together and off we go. I wrote an optimistic project timetable where I would get my hands on the data about seven months into the PhD. Eighteen months in I’ve finally got hold of some unlinked data and I’m still waiting for the rest.


I don't work for News International, so what's the problem? Photo: Christian Sinibaldi

So, what went wrong?

I think my first mistake was assuming that just because the data was there it would be easy to get hold of. There are a lot of hoops you have to jump through first.

I thought that what I wanted to do was simple but it turns out that it’s not. This is apparently the most complicated linkage that the cancer registry has undertaken and the bottom line was, nobody wanted to do it. I spend a lot of time begging people to speak to me and basically being fobbed off, in the nicest possible way. Luckily I eventually found a newly-joined analyst who was willing to give it a go. I’m not sure that she’s thanking me now...

Issues then arose of whether the data I wanted might be identifiable. Variables such as date of birth and death are classed as identifiable and individual records are ‘potentially-identifiable’, even if they don’t include identifiable information (which is an excellent catch 22 – they are identifiable even though they are not identifiable...)!

Finally it seemed like it was all coming together. I’d agreed with the registry that they would supply me with anonymised data containing ages rather than dates, I’d made it through ethics, and I’d got some data. But, on checking, not exactly the data I wanted. So, currently I am discussing with the registry how it will be possible for me to calculate survival time if they won’t allow me to have data on the number of days from diagnosis to death. Survival from lung cancer is short and rounding to the nearest year isn’t going to identify survival differences with any degree of accuracy.

The sticking point is that although they are not supplying me with date of death I could theoretically work it out from this information and that makes the data (aaagh!) ‘identifiable’. However, as I don’t have an NHS number, date of birth, or place of death, I don’t know how I would identify anyone from the 140,000 records I have. Plus I’m a researcher, not a News International journalist, and I’m not interested in anyone individually, so I’m not going to attempt to do this.

Can’t I just sign something to that effect and have the data I need please?

A room of one's own

Posted by Stephanie Clutterbuck

I have never read "A room of one's own". But I thought it made a snappy title for a blog post so I did what any self-respecting early career researcher does when she wants to make sure she is not talking complete nonsense- I Wikipedia-ed it. Turns out it fits quite nicely. You see Virginia Woolf believed that "a woman must have money and a room of her own if she is to write fiction". And although I have no interest in writing fiction I can see her point, a woman must have participants and a room of her own if she is to do science.


Virginia Woolf, by Frederico Novaro

There I was, March 2012, a bright-eyed PhD student confident in my experimental design, armed only with some predictions and a dream. Against my better judgment I believed that data collection in schools would be easy and as long as I asked nicely for ‘a quiet room’ my wish would be granted leaving my data collection to roll merrily along, untainted by extraneous factors.

Fast-forward two months, seven schools and 200 participants later and I have learned an invaluable lesson: schools have very different definitions of ‘a quiet room’.

At my first school I was shown to an open corridor where I was told I would run my experiment. Admittedly, I had to suppress my inner toddler from stamping her feet and screaming ‘This is NOT a quiet room!!’, but I made do. And in fact it would have worked well if the corridor wasn’t simultaneously being used as a makeshift studio for yearbook photos. And then as a meeting place for all the Year 5 boys to earnestly discuss the moral implications of stealing the Year 6’s football during break. To be fair it was a lively debate and I could see their point, why should the older boys get the ball - isn’t that ageism?

Still, data collection continues to roll along in various schools and I have become adept at managing my inner meltdowns regarding the unreality of tightly controlled experimental conditions outside of the lab. I was able to force a smile when a teacher barged into my quiet room (which happened to also be a kitchen) and rattled the contents of every drawer and cupboard in search of a knife to cut cake. And I have learned to tune out repeated renditions of ‘Kung Fu Fighting’ and ‘Heart and Soul’ sung by jubilant five year olds in nearby music rooms.

Fortunately, for my sanity, I feel data collection enlightenment is within reach. The other day I unflinchingly accepted that there was nothing I could do about the man in muddy overalls wielding a shovel and walking through my quiet room. Twice.

Don't give up

Posted by Amy O'Donnell

Before I embarked on my PhD in public health, I spent eight long years at the coalface of policy research. My chosen specialist subject: promoting the participation of under-represented groups in the labour market.

A huge part of that research agenda was engaging with so-called ‘hard-to-reach’ groups to find out their views and experiences of economic and social exclusion. So those eight years saw me reaching out to countless ethnic minority support groups and more fieldwork with long-term benefit claimants than I care to remember. Truly, I had the whole research-engagement agenda licked.

Don't give up

Or so I thought. Right up until the point I started recruiting participants for my doctorate.

For the record, my PhD examines whether we can use routinely collected data to assess the delivery of alcohol interventions in primary care. The fieldwork involves data extraction in 20 GP practices plus interviews with GPs themselves.

I’ve done scores of lone parent interviews. I’ve tracked down Muslim community representatives in the far reaches of Scotland. I’ve recruited peer researchers to access the insular gypsy and traveller community. Bring on the full-time, paid professionals in their permanent, accessible venues!

Turns out that when you don’t have any research funds, when you’re not part of the exclusive Primary Care Research Network, and when you can’t actually get anyone to answer your emails, it’s actually pretty damn difficult to get GPs to take part in your research.

Of course I didn’t quite appreciate this at the start when I posted out my pretty, ethics committee-approved recruitment letters to a select sample of practices and waited for the offers to flood in. They’ll soon come-a-calling, I though, and I’ll go skipping merrily off to collect my data. But they didn’t, so I couldn’t.

Slowly, two key issues emerged. First, I was hardly alone in this endeavour. There are simply zillions of us health researchers trying to grab a few minutes of GPs’ precious time. Understandably, the research that makes financial sense, or reflects a particular interest of the practice tends to take priority. Second, recruiting GPs in the middle of the most significant shake-up of the NHS since its foundation was never going to be easy.

But after many long months of unanswered letters and emails, and playing phone-tag with elusive practice managers, I am delighted to announce that I now have 15 practices recruited and have actually started my GP interviews.

So what happened?

All I can suggest is that I just tried harder. So instead of tens of emails to practice managers, I sent hundreds. I forgot my pride and pestered every friend, family member and colleague I could think of who might be able to help. I fine tuned my data requirements so that I could truthfully assure practice staff that I really would take up as little as possible of their busy day. I offered to visit for a ‘quick chat’ at anytime, anyplace, and with anyone that might listen. I was friendly, positive and professional.

Most of all, I just didn’t give up.

No magic tricks required - recruiting adolescents for research

Posted by Stephanie O'Neil

At a recent event, a speaker began to muse on the difficulty of recruiting adolescent boys into research.

Having spent most of the last decade avidly researching the mystical things we call ‘youth’ and ‘sociology’ whilst trying desperately to combine the two,* I have more experience than most when it comes to working with ‘young people’. So recruiting adolescent boys – right up my street.

Three years ago, I set out on my PhD journey to examine young people’s relationship with alcohol and how they framed their choices about drinking. I knew instinctively that, to some degree, I needed to conduct qualitative research (I also did a systematic review and a Q methodology study, but those are sagas for different posts). This ruled out working in schools, who couldn’t see what was wrong with handing out a survey to the masses. Instead, I wanted to speak to young people alone for up to an hour. And I wanted to do it without parental consent (a topic for yet another post). Absolutely no go in schools, I’m afraid.

So I set out far and wide for youth centres, youth offending teams, and youth and inter-generational projects. I hung out with the youth parliament, on ‘mobile youth buses’ and toured Eldon Green on Friday evenings with youth workers. I took part in air hockey competitions to ‘win’ an interview, made home-made jewellery and watched more Emmerdale and Eastenders than is healthy for your psyche. I became known to the young people of Newcastle as ‘that Mackem alcohol bird researcher’.

Young people in Newcastle

Sometimes, I had to spend several weeks attending a youth group before anyone would agree to be interviewed. Other times, young people would agree straightaway. Regardless, I ended up with fascinating, rich interviews, from an equal split of boys and girls. And all of this was achieved with no incentives. Each young person gave up their time freely and willingly.

I don’t believe that the ability to engage young people (and I do think this is a better term than 'recruit youth') in research rests on being young, female, or a native to the North East – although I am all of these things. What I do think it rests on is how you treat the people you interview.

Young people are not a group that should be considered ‘different’. In fact, thinking of ‘adolescent boys’ as a distinct group that might be hard to recruit is probably the reason why they become difficult to recruit. Like everyone, young people just wanted to be listened to and to know what they were contributing to by taking part in research .

That’s it folks. No other magic tricks required.


*Yes, I’m a sociologist working in a public health department. Please don’t judge me.

Short listing and revealed preferences

Job hunting

Posted by Jean Adams 

Wow!  Fifty six people applied for the research post that Ihad advertised: "4 year research vacancy to support a series of studies on the acceptability and effectiveness of using financial incentives to encourage uptake of health promoting behaviours in the UK."

Four years is anice length of time for a research job.  But 56 applicants?  How's agirl supposed to do justice to the more than 600 pages of application stuffthat these generate?  Obviously, the solution is Newcastle University'sshort listing matrix grid.*  Tick here if your candidate has the qualitieslisted in the job description.

So of 56applicants, guess how many definitely looked like they had the rightqualifications and experience in an appropriate research area?  No, really- guess.  Wrong! 

Guess again. Wrong again!  

It was four. Including one person who didn't really but had such an outstandinglyimpressive academic record, and has run a successful business since the age of13, that I felt I couldn't not interview them.  Plus another six lookedpotentially like they might be good.

I don't have vastexperience of employing researchers, so I don't know if this is unusual. But I thought the general pattern was quite interesting.  The notshort listable fell into three, not mutually exclusive, groups:

1. People with aMasters in Public Health but no real-life research experience beyond their MScdissertation.  None of them had published a paper from their MSc - whichwould have counted as real-life research experience.  

2. Doctors andother health professionals from developing countries.  Some with vastclinical experience.  Some with Masters in Public Health (see 1 above). But still no research experience.

3. People withextensive laboratory research experience.  Lots of PhDs.  Even some muchmore senior people.  Some even said in their 'statement of intent' thatthey were looking for a position in Cell Biology.

Now as I writethis I'm wondering if I was too harsh.  How are people supposed to getresearch experience after their MSc if people like me won’t hire them?  Ibet you some of those foreign doctors are highly competent and could put theirhand to most things.  Why shouldn't research experiencebe transferable from lab to office?

But what really, really astounded me is that not one singleapplicant stated what their interest was in my particular researchproject.  They were all passionate about publichealth, keen to expand their skills and experience across a range of researchmethodologies, and excited to work in such a prestigious department asours.  But none of them had anything tosay about using financial incentives to encourage uptake of health promotingbehaviours.

Perhaps this is revealed preference at its sharpest.  Maybe nobody out there is interested in myresearch.

*Not quitetrade-marked yet.