Making the rural a bit more idyllic

Guest post by Christina Dobson, Research Associate, Institute of Health and Society, Newcastle University

Ah, the countryside. The home of all that is natural and healthy, the epitome of the ‘good life’. Where you can stroll down the lane to collect fresh eggs or veggies from your neighbour, simply dropping your money in the honesty box left at the end of their drive. I grew up in a rural area, and still live in one now. I love that I only have to walk (more like dawdle - I have a very curious and distractible three year old!) for 10 minutes (five minutes without said three year old) from my front door and I am in the North Yorkshire Moors National Park.

And it seems that living in a rural area could actually be good for you in a number of ways. You are likely to be more satisfied with your life, experience better health overall, and live an average of two years longer than people in urban areas. Maybe it’s the un-polluted air, the connection between land and food, the sense of belonging and community? Or maybe that is just a myth, sold to us all through Postman Pat?

Because, actually, living amidst the beautiful rolling hills may not be so good for you if you develop cancer. In fact, it may even put you at greater risk of developing certain cancers and make you less likely to survive your cancer. With roughly 20% of the population of England living in a rural area, this poses a serious public health problem.

However, we don’t really know why rural patients are facing poorer survival rates than urban patients. One of the strongest factors is that cancer is often diagnosed at a more advanced stage in rural patients, limiting the treatment options available to them. We know that delays in diagnosis are strongly linked to advanced stage cancers, and, as such, encouraging early diagnosis has been central to UK cancer policy for over a decade.

When we begin to think about where diagnostic delays may be occurring for rural patients, it seems that they are investigated and diagnosed just as quickly as urban patients, after referral to hospital for specialist assessment. It follows then that there may be problems prior to referral to hospital that are slowing down rural cancer patients’ diagnoses, either in the way patients respond to symptoms, or the way they are managed in primary care.

Thanks to funding from Yorkshire Cancer Research, and alongside colleagues from Aberdeen and Glasgow, we are starting to look for answers to some of these questions. This study will involve interviewing people in rural Yorkshire to understand their experiences of bowel cancer symptoms and decisions around if, how, and when to seek help about them. The findings from these interviews will be used to work with local communities to think about what interventions we may be able to design to encourage people in rural areas to present to their GP and, hopefully, increase the likelihood that their cancer is diagnosed at an earlier stage and that they will survive.

It is an exciting study, as there is so little known about symptom experiences in rural populations, with lots of issues to explore. For instance, availability and regularity of public transport, provision of health care services in rural areas, hidden poverty, cultural beliefs and experiences of ill health and employment, to name but a few. And then there’s the messy complexity of defining the ‘rural’, or maybe we should be looking to instead describe the multitudes of ‘rurals’? Plenty to keep me busy!

With the arrival of National Bowel Cancer Awareness Month it’s been valuable to reflect on the importance of this study and the opportunities and challenges that lie ahead. Understanding some of the barriers to timely presentation that exist for rural populations, and devising ways to overcome them is our challenge for the next two years, and beyond. Maybe, longer term, we can help to make the ‘rural’ a bit more idyllic.

The value of involving patients and the public in research

Posted by Christina Dobson

After working for two years as a researcher in the Evaluation, Research and Development Unit at Durham, I began my PhD in January. My PhD examines the effects of social context on symptom appraisal and help-seeking behaviour among patients with symptoms suggesting lung or colorectal cancer. Specifically I'm comparing the accounts of patients who have relatively short help-seeking intervals and patients who have a longer time to presentation. Over the past few years I have been lucky enough to attend a number of seminars which touched upon, or discussed in detail, the importance of patient and public involvement (PPI) in research. I always agreed with the value of public involvement and was sure I wanted to incorporate it into my PhD but arguably viewed it in a ‘rose-tinted spectacles’ type of way - not really understanding it’s potential. 

I tried to recruit some patients for a bit of PPI two months before my ethics application was due but with two weeks to go I still had no-one. My previous passion about patient involvement became more of a fear of not having that ‘box ticked’. A few days later I had got two lay representatives who were interested in being involved, Simon*, a local patient, and Penny*, a patient rep on another study I work on. I sent the documents off (after a terrible explanation of patient involvement in research during the call to Simon) and felt relief that that it was coming together and I had ‘ticked the PPI box’.

After a few days I got a phone call from Simon, and then a couple of days later one from Penny too. I received a comment about the absence of a question on the national bowel screening programme in my interview schedule, something so obvious considering I had worked on a study looking at the barriers to participation in FOBT screening. The title on the study documents (‘Understanding Factors Affecting Help-Seeking’) was heavily critiqued, and rightly so, it was complete jargon and obviously intimidating. So we co-created a new title of ‘A study about what makes people decide to go to their doctor.’ There were a number of other issues raised but I also received a lot of support and praise for other aspects of the study design which boosted my confidence and belief that the research is valuable.

During these conversations I was listening more as a ‘person’ and less as a ‘researcher’ and agreeing – nothing either Simon or Penny said did I disagree with. Reflecting on these conversations made me realise that as researchers, it is very easy to remain firmly seated within our academic bubbles, using our exclusive languages and assuming people understand our implications without explaining them. If we took a more detached look at our research we would be able to see many of these issues ourselves. But too often we become wrapped up in our work. It gets difficult to see the wood for the trees and even harder to take a truly critical look at our ‘babies’. This is why PPI is so valuable, and should be a central part of our research approach.

Most of us in research do what we do because we believe in it and hope that someday our work may make even make the tiniest bit of difference to someone, somewhere. To help us achieve this we need to have good, representative recruitment rates, and to achieve this we need to make participation accessible and interesting.

I can't thank Simon and Penny enough for their input into my study so far. Not only have they improved the quality of the application and study documents, I believe their input will have improved recruitment to the study. Most importantly though, they kicked me out of my academic bubble, and made me think about the study as my lay self, and not my researcher self.

At this point in the study I don’t have any real pearls of wisdom to share. All I can say is please ‘go there’ and don’t just treat PPI as token gesture. I have found that embracing the lay representatives’ input has significantly benefited my study and I am excited to see how Simon and Penny will help to shape the study as it progresses.

Has anyone else had much experience with patient involvement in their research? I would love to hear your stories.


*not their real names