#WhyWeDoResearch Campaign
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Can patients that participate in research be a source of  Patient and Public Involvement in research? by @Lynn_laidlaw

16/9/2018

8 Comments

 
​I spend hours thinking about and participating in PPI, mainly for research, its my passion. I am a Patient Insight Partner with Arthritis research UK, part of the Heart Voices group at British Heart Foundation and an active member of Dr Allison Worth’s PPI Group in Edinburgh. I have recently joined the Public Engagement Group at the Chief Scientists Office in Scotland. As I attend a District General Hospital and have a rare, complex disease, opportunities to actually participate in research have been limited.

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That changed recently whilst attending cardiology for investigations. I was invited to participate in a clinical trial looking at whether a specialist type of coronary angiogram could help diagnose microvascular heart disease. Of course I accepted not least because I was desperate to receive a diagnosis for the disabling symptoms that were having such an effect on my quality of life. ​
I viewed the process thereafter through the lens of my PPI experience. I felt the Patient Information Sheet ( PIS ) was overly technical, is it informed consent if the patient doesn’t realise what they are consenting to? The Dr admitted that the PIS had caused confusion for most patients.
 
After the angiogram I was randomised to the results group, told I had microvascular heart disease, given some medication and sent on my way. I have no cardiac risk factors apart from my underlying auto immune disease, no one was willing to explain my diagnosis in the context of that. I was given no written information. I wasn’t asked about ongoing communication from the trial team and whether I would like a copy of my and the trial results.
 
I reflected on my experience and felt I had some insight to offer the trial team not just confined to improving the PIS and the patient experience. Recruitment and retention can be a issue in clinical trials, so surely patient involvement could only help? Researching my diagnosis proved difficult as there is a paucity of research into microvascular heart disease. I started thinking about the research questions that would be important to me as a patient and felt I would really like to help disseminate the research findings.
 
I had all these thoughts and ideas but no way of communicating them to the trial team! My role was to be a recipient of the research process, not an active participant! I reflected on all these points and then decided to e mail the PI with my thoughts. They were very receptive and as a result we are due to meet soon. 

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​Of course you may think I am not a “ typical “ patient but I don’t believe I am very atypical! If we believe that PPI in research is essential then shouldn’t we be actively promoting PPI by any means?
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Give trial participants a chance to be active participants, ask them about their experience, what could improve the process and whether they would like to be involved in identifying follow on research questions.
 
My #WhyWeDoResearch: Because it matters, it can be  the difference between life and death, living or existing. It gives me hope and makes me feel I still have something to contribute despite ill health. Partnership and collaboration improve all research outcomes.
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8 Comments

#WhyWeDoResearch - A Commercial Perspective by @@LeighBoxall

4/9/2018

218 Comments

 
Hello, my name is Leigh Boxall and I’m a Site and Resource Manager for a global Commercial Research Organisation (CRO). I know that the world of commercial research can sometimes be perceived as “the dark side” and having only recently moved into Industry, I wanted to share my experience and perceptions to date.
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First; a bit of history about me and how my reason for doing research has changed during my research career to date.
I started out as a Research Physiotherapist, getting involved in local small-scale research projects because my manager told me I “asked too many questions” about why we did the things we did! It was a fantastic opportunity to help shape a protocol, collect data and analyse the results. I really appreciate now why research takes so long to develop and how hard it is to disseminate and embed in practice.

I guess my very first #WhyWeDoResearch was “to better understand Physiotherapy treatments and promote evidence based practice”. 


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​I then moved into a Research Practitioner role for the CRN. I was working on a mix of commercial and academic studies. I saw that patients and their families benefited from taking part in studies; not only from the new treatments but from the added care, investigation and support they gained from participating.
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My #WhyWeDoResearch at that stage was “to provide the best care and evidence for patients and their families and offer as many people as possible the opportunity to take part in research”.
 
Later, as a Lead Research Practitioner, I was overseeing a large portfolio of studies, across all therapeutic areas. It was about this time that the #WhyWeDoResearch community was developing and Twitter became a really empowering platform. We connected with teams across the country and internationally to better understand our shared challenges in delivering research.
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My #WhyWeDoResearch at this stage was “to ensure research is everyone’s business”.

The opportunity to move into a commercial role came about last year and whist I had not considered this avenue before; I knew it would broaden my horizons and provide a new clinical research experience. I was nervous about making the transition. I worried that I’d be surrounded by people who thought differently to me and I’d feel torn between my clinical background and a corporate, profit driven environment.

I won’t pretend it hasn’t been a massive adjustment. Working for a CRO does feel very different to the NHS and I have had to adapt my management style as I find myself leading a team of Clinical Research Associates (CRAs), some of whom I only see face to face a couple of times a year. The global nature of the company means that I liaise with Project Leads from all over the world and overcoming time-zones and language barriers is a must. As a CRO we are trying to meet our customers (the Sponsors) expectations whilst relying on and working with the Investigators and site teams to ensure patient safety and data quality. We have a multitude of metrics and timelines that we are measured against and of course as a business, revenue is an important factor.

However; the thing that has really struck me is that whenever I talk to my colleagues about why they do research; fundamentally their reasons are the same as mine. Patient care and driving improvements in diagnosis and treatment really is at the core of why they do what they do. I’ve seen it at every level of the company. I’m astounded by how many people I’m surrounded by with a clinical background; my manager is a Medic, above her a Nurse, above him a Dentist and above him a Nurse. They all have their stories and experiences of where there are still unanswered questions in their field of expertise and they are all driven by a desire to continue improving healthcare outcomes.

I think there is a lot to be gained from sharing lessons and experiences across healthcare delivery and commercial research organisations. The more we understand about each other’s environments, our strengths and our limits, the more collaborative and effective we become in delivering better patient outcomes.

​I’ll end on my current #WhyWeDoResearch which is to “offer new treatment opportunities to patients and ensure their wellbeing and safety is at the heart of what we do”.
 


218 Comments

    Introduction to our guest blogs

    We are delighted to host guest blogs from our fantastic followers. Blogs come from patients, members of the public & from healthcare professionals. They focus on why people are involved in research, what it means to them and what they would like to see happen in the future of research.

    Occasionally, we also host 'Spotlight on...' months - in these months you will see a blog per week from patients, public and staff centred around a specific topic / illness / disease area. We also host a tweetchat on the topic during the same month. Follow #whywedoresearch on twitter to keep up to date with these.

    If you would like to guest blog for us, please contact @ClaireW_UK or @keeling_michael via twitter

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