1/4 of the way to my goal!

Image by Free-Photos from Pixabay

I was inputting the data of the two latest people who agreed to take part in SYMPACT when I realized that  the total of people who have agreed to take part is now only 3 people away from 100! SYMPACT is now more than 25% of the way to the goal of inviting 350 people to share their experience with me of living with heart failure! Thank you.

While this means that so far my PhD project is on track. It also means I still need 253 more people with chronic heart failure to share their experience with me. You can find out more by look at the about SYMPACT page or by dropping me question on the contact form at the bottom of that page.

1/7th complete!

Photo by Hello I’m Nik on Unsplash

A little over 2 months in and SYMPACT is recruiting well. I’m happy to report that we are 1/7th of the way to the goal of 350 completing the study. Yes, technically SYMPACT is a little behind schedule from planned recruitment, but only a little. I’m confident that we’ll catch up soon as momentum builds. I’m a ‘silver lining’ person, so I’m choosing instead to focus on all that we have achieved in a short time. 51 people with chronic heart failure have been generous with their time to hopefully help us understand their experience better! Thank you to everyone who is helping me with my PhD!

 

Second SYMPACT site opens!

The second site for SYMPACT officially opens to recruitment!

On January 17, University Hospitals of Southampton NHS Foundation Trust (UHS) research team were given the go ahead to invite people who attend the UHS with chronic heart failure to take part in SYMPACT. I had gone to meet their team, led by Simon Smith (pictured below), earlier in the month and was happy for them as they were excited about SYMPACT.

Within 24 hours they had two people with chronic heart failure who were interested in participating, one who had completed all the questionnaires. Looking forward to what this research team will accomplish in the months ahead! I’m grateful for the help in making SYMPACT a success and in so doing helping me ensure my PhD is successful. It is important to note that expanding SYMPACT wouldn’t be possible without the support recieved by the NIHR CRN Wessex.

First piece completed!

Yesterday, the Cardiology Research Team at Queen Alexandra Hospital, in Portsmouth successfully invited and assisted the 10th, 11th, and 12th persons to participate in SYMPACT! So they get the pleasure of completing the first puzzle piece!  There are still a lot of pieces to go (one piece equals 10 people who agree to participate in SYMPACT), but it is an amazing start. I have no doubt I’ll be adding another piece soon!

Anne Suttling, Serena Howe, Charlotte Turner, Rosalynn Austin, Amanda Bakes, and Kerrie Scott

Thank you to the Cardiology Research Team for their support and hard work! Thank you to all of the participants so far. From the puzzle you can see we still need quite a few more people to take part so if you have heart failure, please take a look at the “About SYMPACT” to find out more detail about what taking part might mean.

First three participants have completed SYMPACT

(c) flicker, Marc Accetta

In the past week, the Cardiology Research team at Queen Alexandra Hospital (QAH), have successfully received the consent of the first participant into SYMPACT. They did this within an hour of getting the “green light” to approach people to take part who are attending the  QAH for their healthcare. Even better within the first week they increased the number of people the invited to participate to 5, three of which have completed their questionnaires. Only 7 more to go until I can colour in the first puzzle piece to the heart. The heart puzzle will represent how well we are doing in the recruitment, each puzzle piece means 10 people have agreed to help us with the study and have completed the study questionnaires.

While this is very early in the progress of SYMPACT, as I would like to invite a minimum of 347 more people to share their experience of living with Chronic heart Failure through this study. If you have been told (or know someone who) that your ‘heart is no longer pumping efficiently’ or that you have heart failure we need you! This will involve completing 3 questionnaires at a single timepoint. for more information you can click on the tab “About SYMPACT” to learn more or to get in touch with us to find out how you can help with the study.

Thanks again to the research team at QAH who helped with the set up of SYMPACT at your site, and Serena Howe for consenting the first participant. A special thanks to the everyone with heart failure who have  already kindly shared their experience and given their time to help with this study.

Update

It has be a while since I posted anything, but rest assured I’ve been busy. As a little insight into the process of getting a research study open and recruiting I’ll share a little of what I’ve been up to.

Once you have a protocol written the depending on the Univiersity process (as my study is linked to a PhD) you may have to have your protocol peer reviewed. For SYMPACT I had two peer reviews of my protocol and both were really positive and only asked me to make minimal changes. This was good news but it still took about a month to process.

Next, at the University of Southampton, you need to submit your protocol to their Ethics review process through a online platform called ERGO. Their ethics committee and governance team then look over everything very carefully and then will ask you to make revisions. For SYMPACT the revisions they requested were minor and in the beginning of Oct I received their ethical approval.

Photo by rawpixel on Unsplash

But I couldn’t open SYMPACT yet. As I plan to invite people who are patients in NHS health trusts to participate I then have to apply for Health Research Authority (HRA) ethical approval. This is done online through the IRAS system. So this is where SYMPACT is at now. It is currently under review and once I receive approval…

No I still won’t fully open. Once I have full ethical approvals I can then open the study to recruitment so I’ll be putting up posters in public spaces and posting about it here and on social media. But I’ll have one more approval that I need to get before I can invite patients in the NHS to participate. The final stage will be receiving local approval from the research departments at each NHS health trust before we can start asking patients to take part.

The good news is we are almost there. Hopefully I’ll have another update with the final ethical approval soon. Thank you for your patience.