Research Priorities in Chronic Disease Management

Managing chronic conditions in primary care

We want to bring together those directly affected by chronic conditions – patients, carers, family, and healthcare professionals – to identify and prioritise their unanswered questions about managing chronic conditions in primary care in Ireland. 

To do so, the HRB Primary Care Clinical Trials Network are embarking on a Priority Setting Partnership (PSP) with the support of the James Lind Alliance to decide the top priorities for research about the management of chronic conditions in primary care.

As we begin 2024, we are delighted to be entering the final stages of the PSP. We will be hosting our final workshop in Galway in late January – if you would be interested in learning more about this, please click here to send us a message. 

Find out more

Find out more about the JLA PSP method by watching the video or clicking on the sections below. 

We’re really eager that this project reach as many relevant people with chronic conditions or those caring for them as possible.

If you are a person with a chronic condition, the family, friend, or carer of someone with a chronic condition, or a healthcare professional who treats chronic conditions in primary care, you can submit your thoughts now by clicking here.

If you are part of an organisation with a relevant audience, we are always open to new partners who could help us share our project widely. 

If you’d like to get in touch with us to ask a question or discuss possible partnership, please click here to send us a message. 

We recently carried out our second and final survey, where we asked people who are managing chronic conditions* to rank a longlist of priorities for research in order of what is most important to them.

We have developed this longlist by summarising the responses we got in our first survey, where we asked for submissions of topics that people felt would be important for research to address. These responses were carefully reviewed and grouped together to create a longlist that represents all in-scope submissions without including duplicates. 

We are now taking the results of that survey and using them to help us prepare for our final workshop, where the rankings of survey respondants will be used to kick off focused discussions about the ultimate Top Ten list that we will then champion into the future. This final workshop will take place in Galway on the 22nd of January. If you would be interested in hearing more about this workshop, please click here to send us a message. 

*people managing chronic conditions includes those with chronic conditions, their family, friends and carers, and the healthcare professionals treating them

If you would like to read our project protocol, a living document outlining our plans, please click here. 

Chronic conditions are incredibly common, and the management of chronic conditions is a major demand on primary care. In Ireland, the total number of people affected by just the top 4 chronic conditions (diabetes, asthma, cardiovascular disease and chronic obstructive pulmonary disease [COPD]) is approximately 1 million. With an aging population, these numbers will likely increase in the coming years, as will the pressure on those affected and the healthcare system. 

Priority Setting Partnerships or PSPs are a prioritisation process developed by the James Lind Alliance, that brings together patients, carers, and healthcare professionals to identify and prioritise the unanswered questions they have about a specific topic. 

PSPs are led by a steering group made up of key stakeholders with direct experience of the topic, and they have responsibility for all decision making during the PSP. They decide how best to collect and collate unanswered questions, and then sort and categorise questions into a list ready for ranking. 

Final prioritisation happens in a workshop setting, where a Top 10 list of questions is decided on. 

This list is then championed by the steering group and promoted to researchers and research funders to encourage them to incorporate these questions into future research. 

The James Lind Alliance, named after James Lind, a pioneering Scottish navel surgeon who trialled the use of citrus fruits to combat scurvy in the 1700s, are an organisation funded by the NIHR in the UK. They support the use of the JLA method of PSPs, which aims to address the mismatch between research being carried out and research that patients and healthcare professionals want. 

Our partners are relevant organisations and interest groups who are helping us share the PSP with their members and through their communication channels.

We are hugely grateful to these groups for their involvement. If you’d like to find out more about each group, please click on their logo to be brought to their website. 

If your group would be interested in partnering with us, please click here to send us a message.

 

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