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.

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.

2012 Departmental Conference

The Annual Health Sciences Departmental Conference took place on 11th December. It was a chance to celebrate the successes of various research projects this year and to hear about the progress made by PhD students in their studies. I thought the conference was a unique opportunity to meet others within the department, especially as many researchers are either scattered across numerous sites within Leicester or have work patterns where regularly working away from the office is an option. The first thing I noticed was the sheer number of attendees, easily surpassing the 100 mark, all under the same health research umbrella. The icebreaker gave me a chance to find out more about the research teams from The Infant Mortality and Morbidity Studies (TIMMS) Group to the Biostatistics team.  After the ice breaker and team working activity, presentations were given.

More to follow shortly.

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!

First week, finding my feet

I spent this week reading through research protocol and sifting through other relevant documentation to get gain an understand of project. Note-making (on paper, not a pc!) seems to work best for me as a way of engaging with text over long periods of reading. I like to use flow/diagrams that show the development of my understandings of the content, with questions and quotations on the diagram periphery. The questions are useful to feedback to my line manager.

Below is a link to one of my diagrams:

Project Diagram