Primary Care - research group

Gremlinertia

Hi all, a researcher from NUIG will post in this thread about a study being undertaken regarding primary care, I will let them explain the details but I will be participating and I'm allowing here as a legitimate project.

Grem

ChronicConditionsPSP

Hi everyone! I’m a researcher with a group called the Primary Care Clinical Trials Network, which is based in the University of Galway and funded by the national Health Research Board.

We are currently looking for people affected by chronic health conditions to submit their thoughts on their own relevant experiences or the questions they would like to see research answer in the near future in a short survey. This can be done at www.primarycaretrials.ie/psp (look for the purple button at the top of the page), where you can also find more background information on us and the whole process.

Who are we and why are we doing this?

Our research group’s main aim is to support and encourage high quality research focusing on primary care in Ireland. We work with researchers in Ireland to help them decide how best to carry out strong, safe, and impactful research in primary care, and support them to get funding and other resources for their work.  

As part of our aims for the next few years, we are now leading what is called a priority setting partnership (PSP) which is a collaborative process to discover and rank people’s priorities for research focusing on managing chronic conditions in primary care. We want to make sure that the research we support has real-world impacts for patients and healthcare professionals, and feel that this is a good way to make that happen.

What exactly are we doing with this information?

We are now at the first stage of this process, which is to ask people to submit their thoughts and questions in a short survey. Once that's done, the submissions will be sorted into a longlist of questions, which then will go out to the public again for ranking in order of importance, and finally after that there will be a final in-person workshop to go over all those results and decide a final top ten. My research group will then take up that top ten list and support others to start answering those questions.

In this initial survey, we ask for some basic information about yourself too. As we explain in detail on the survey, this is just so we know who we are reaching so we can make sure we are getting a wide audience. This information is not used to analyse responses one by one or in any other research capacity.

Who makes the decisions in this project?

This is not a traditional research project, it is more of a consultation process. We’re being guided by the James Lind Alliance to make this a true partnership with the key stakeholders. As such, our first step was to set up a steering group of people directly affected in this area – people with chronic conditions, carers, charity representatives, GPs, nurses, and other healthcare professionals. They have made all the decisions relating to how we decided where to focus, how we worded our survey, and will similarly guide the later steps. Researchers like me are involved, but in an organisational role.

If you have any more questions I haven’t answered here, please post and I’ll get back to you, or use the contact information on the website/form to get in touch!

ChronicConditionsPSP

Hello everyone, sorry to resurrect an older thread but I am doing the rounds to update anyone who may have been a part of this project already.

Following on from the survey I posted about in April, we have developed a longlist of 30 unanswered questions based on the topics and themes in all the submissions, which we now want your help in prioritising.

To do so we've got one more survey, which should take 5-10mins. It asks you to pick the items on our longlist that are most important to you, which we will use to help us determine the final Top Ten list. Like in the earlier survey, we also ask for some basic information about the person responding, while ensuring that all responses are anonymous.

Survey link is the same as in the above post!

Completing this survey will help us to ensure that the final items and order of the Top Ten reflect the priorities of people with direct experience of managing chronic conditions – that is, people with chronic conditions, their families and carers, and healthcare professionals in primary care.

At the very end of the survey there is also a place to leave your email if you would be interested in hearing more about the final workshop stage of this project, which will take place in January 2024. We will review expressions of interest and issue invitations to a diverse range of health professionals and people with lived experience of chronic conditions to take part in this day, and we really do encourage everyone with an interest to submit their email.  

If you have any questions, I'd be more than happy to answer them through here or through the contacts on the website link.