Experiences of clinical trials

During the CLAHRC event “Making it Real – Patients and public improving healthcare research”,Leicester,  one of the sessions I attended was delivered by a patient who had extensive involvement within various clinical trials over the past few years.  He was a great example of how health research, once recognised as an invaluable part of the improvement of treatment pathways for illnesses, can attract a greater number of patient participants. For him the trials were not separate from his current clinical treatment, but instead were directly related to revealing ways of making that treatment better.  Barriers he observed to research participation included poor advertising and the scientific terminology used to describe the research aims, objectives and patient requirements . These were two of many observations flagged up as impeding access to trial information for patients. Present in the audience were health researchers and healthcare professionals involved in research and so one would hope that hearing the comments on potential improvements from a participant’s point of view may influence their methods of recruitment in future.

Patient involvement in research is ever-increasing, further embedding itself into standard research practice here in the UK which is great to see. The UK Clinical Trials Gateway and the national advisory group INVOLVE are among those that provide resources and information that help to keep patient & public involvement high on the health research agenda.  By involving the patients and the public, clinical research will hopefully continue to democratise, increasing the amount of accountability of the researchers by allowing transparency throughout the research process. Overall this will pave the way to  better research practice on the one hand, and increase public awareness and confidence in research on the other. I think that striving to do so may be a good way of increasing patient involvement within clinical trials.

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Athena SWAN 2013

The Athena SWAN event took place last Wednesday at the University of Leicester. This year’s theme was ‘Breaking through the Barriers of Bias’ with an insightful keynote speech by Professor Jennifer Saul, professor of Philosophy from the University of Sheffield.

Women, across all academic fields, are underrepresented in the STEM subjects (science, technology, engineering and mathematics). The event aimed to discuss whether our hidden biases as individuals were unconsciously denying women opportunities with academia. The two main strands were concerning implicit biases and stereotypical threat.  In summary, implicit biases are biases which individuals have towards certain ‘groups’ of people who they have unknowingly stigmatised within societies. I use the word groups quite loosely her, as it refers to different socially constructed groups dependent on the context; gender and race can be included within these groups but other groups do not have to be as fixed or apparent. Our instinctive reactions to different members of these groups were what Professor Saul wanted to draw attention to, and the “Project Implicit” psychological test illustrates this point in practice – https://implicit.harvard.edu/implicit/ .

Stereotypical threat was an interesting theory of how an individual may unconsciously undermine their performance do well due to an awareness of belonging to a particular group thought of as being ‘less good’ at certain tasks. The individual may begin to ‘live up’ to their group’s labelled characteristics, subsequently leading to underperformance. An example was given of a study involving children at a young age; infant school girls were told that boys were better at maths before embarking on a test and their results were compared to control groups of girls. The test was repeated with different sets of children and, consistently, those who had been told the additional information did end up doing significantly worse than the others. It did make me wonder just how early we form our biases and which elements within the environment around us influence our biases more.    

Group discussions during the second half of the event brought through ideas of combating implicit bias as mentioned by Professor Saul (i.e. citing more women in papers, having a male/female balance on university students reading lists) aswell as opinions surrounding the effect of implicit bias on recruitment of academics, promotions, merit awards, pay and promotion. Comments surrounding maternity leave and the strain this causes on ‘keeping up to speed’ with developments in your academic department dominated the discussions on promotions and pay. We shall wait to see how the recent government amendments will have an effect on these views and what plays out in practice.

At the end of the session I did feel that there were a lot of problems highlighted but there were complex challenges of to making change happen. This is especially as many individuals (regardless of gender) may feel that they are immune to bias and will therefore not take the step to even recognise the effect of implicit bias in their decision-making, let alone positively work on ways to limit its hidden effect.

Evaluating Healthcare Services (NIHR)

On Monday (25/2/13) I successfully completed a two week online pilot for a new Health Services Evaluation Course created by the CLAHRC LNR (Leicestershire, Northamptonshire and Rutland).  After defining the purpose for the evaluation (establishing whether the project was indeed an ‘ evaluation’ and not a clinical audit or a piece of research), the course talked me through how best to define the evaluation question, aims and objectives;the identification of the relevant stakeholders and evaluation team members, defining their input into the project; and how to select the most suitable methods of carrying out the evaluation, agreeing on timescales, resources and strategies for dissemination. The most important stage, in my opinion, was the succesful identification of all the stakeholders and recognising their appropriate levels of involvement within the evaluation. Sometimes the views of certain stakeholders are maginalised in favour of stakeholders who are more influencial to the project. This can be problematic when those individuals are the direct recievers of the particular healthcare service being evaluated,  yet their voices are not heard the loudest.

Using the online interface was a good way to interact and discuss ideas with others working on a wide range of health evaluations in primary and secondary care, despite the fact that they were based in various locations. Discussion boards and the Wiki format were actively utiltised and comments posted were always on topic and constructive.  I can see the online course format working well in practice when it is rolled out to health professionals in the area.  

Many thanks to Tammy Holmes and Rachel Lovesy for providing me with the opportunity to take part.

CLAHRC Teambuilding Day – Podcast/ Video Champions!

CLAHRC Teambuilding day

CLAHRC Teambuilding day

The annual CLAHRC team-building day took place last week and was attended by both researchers and administrative staff members working within the collaboration. The task this year was for each team to plan, record, edit and present a video production of a five minutes based on an aspect of the CLAHRC of their choosing. The judges of the videos were part of Patient Public Involvement (PPI) groups within the area (PPI’s are open for all patients or members of the general public who are interested in health research, providing them with a platform to voice their opinions on the health services within their locality). As the judges were not health researchers themselves, it was important for all teams to communicate their ideas clearly and effectively.  I’d say that the greatest challenge was the actual creation of a video from storyboard to screening in the space of a few hours, with so many team ideas to choose from and work into the final production. The idea that my team decided on was related to the importance of transferring health research into practice, communicating the value of CLAHRC-influenced health interventions to the patients. The judges were thoroughly impressed by all efforts but there could only be one winner!  Many thanks to Kevin Quigley, Adelle Horobin, and Shona Aggrawal for their ideas and expertise which made the video the product of a great team effort.

MS Word 2010 Long Documents

The training covered essential Word document tips that I think everyone working on a report, paper, thesis or any other long document should be aware of. Navigating within reports or papers-in-progress can be difficult and time-consuming if you are unaware of the Headings features. All the features can be customised and saved ready for use on different parts of the document. They help to create a structure for your work whilst maintaining the flexibility you require within the drafting and write-up stages.  The short course was a brilliant overview and is bound to save me hours of unnecessary formatting!

I found a similar, shorter tutorial-style course is available from the Microsoft Office Support page.

Web Training – PLONE and Web Writing Technique

I attended an introduction to PLONE training course to gain the appropiate ‘web skills’ for managing and updating websites. PLONE is a Content Management System used by the University of Leicester on their website. The training introduced me to the work that goes on ‘behind the scenes’ to allow for the production of a functioning website.

The Writing for the Web training shifted the focus from website management to web content. Prior to attending the course, I was unaware of the importance taking a different approach when working with websites as it was common practice to see information from print media transferred  in its orginal layout directly onto webpages. As far as I knew, very few changes were necessary –  how wrong was I! In fact the example mentioned above was cited amongst the top, most detrimental actions carried out by web authors. Web writing etiquette is slightly different to ‘off-screen’ writing in that certain omissions that would seem improper on a printed document are acceptable, and often encouraged, when addressing a web audience.

I progressed through the course and began to realise just what I really meant when I described some websites as being ‘better’ and ‘easier to use’ than others. ‘Better’ websites were clearer, easy to navigate around, but more importantly, they were telling me the information that I needed to know very quickly. Unlike print media where you are willing to invest time in reading the latest issue or edition (often from cover to cover),  websites act as information sources that can be quickly accessed to find out more about a topic or an activity. So it is important for a web author to bear the user’s intent in mind, designing a website that provides the most efficient way for presenting the information users want to find. Bad websites repel good traffic as interested users, possibly attracted to the relevance of a particular website title from among a list of search engine results, quickly move off the a site when it becomes too difficult and time-consuming to find the information they require.

Examples of eye tracking results when users view a webpage were used in the training to illustrate just when people look the most. This tended to be the top left of any webpage so one should always try to put the most relevant set of information or links in that area. Here’s an example: eyetrackingimage

Source: http://johnnyholland.org/2009/10/ux-an-art-in-search-of-a-methodology/

The tips and tricks were valuable and I’ll be trying to impliment them all as best I can.  I suppose that means I have no excuses for a poorly-designed webpage in future!

NVivo9

On the 15th November I attended the first of a two part course on the qualitative analysis aid software NVivo9.  I hadn’t used the software before and I thought that it would be worth finding out how it could help me to organise my data for analysis. After conducting some more interviews, I was looking for a tool that could  facilitate the analysis of my interview transcripts. On first glance, the ‘dashboard’ didn’t appear to be quite as confusing as I thought it would be, with elements such as the Ribbon toolbar reminding me of parts of Microsoft Office:

   By the end of the day, I had learned the basics on how to code data (or assign category labels to texts that with enable similar comments by interviewees to be grouped together)  using ‘Nodes’ on a ficticious dataset, and how to query the dataset (asking the software to display certain data based on specific characteristics chosen by the user).  As is the case with most computer software, it is only as useful the user makes it and NVivo9 is simply a tool to help you with your anaylsis – it will not do any analysing for you!

I’m now in the process of applying the same techniques to my own interview data ahead of the next session so that I have real data to work with during the training.