Connect with us
  • Elysium

Insight

Brain injury research – ‘See survivors as more than participants’

ABI Ireland and Slater + Gordon discuss the need to put people with brain injury and their families at the heart of research

Published

on

Sabrina Lawlor, a principal lawyer at Slater and Gordon Lawyers (UK), Grainne McGettrick and Dr Lorraine Crawley from Acquired Brain Injury Ireland (ABI Ireland) discuss the importance of research to aid transformational change by involving ABI patients and their families in the discussion 

 

Although Irish solicitor Sabrina Lawlor has worked in the legal sector in England for over 15 years, she has remained connected with various charities in Ireland who actively support people living with neurological conditions. 

“I believe it is important to connect with neuro-rehabilitation networks in other countries,” she said.

Sabrina Lawlor

“For instance, it is not uncommon for a solicitor in England to be instructed to represent a person who has suffered a life-changing injury but lives in, or wants to return to, another country at some point during their rehabilitation journey. 

“In my legal experience, medical experts and treating clinicians often turn to quantitative and/or qualitative research to assist with identifying a specific type of treatment or medication; or a suitable type of living or working environment; or the latest assistive technology and equipment that may support an individual diagnosed with a neurological condition. 

“Research can ignite and generate new ideas and concepts; may open a discussion with various stakeholders such as politicians, and trigger new legislation. 

“Ultimately, research has the potential to empower people living with an acquired brain injury. The power of research can be transformational and revolutionary. As Ghandi once said ‘in a gentle way, you can change the world’. 

“One charity I have admired and followed over the years from across the Irish pond is Acquired Brain Injury Ireland (ABI Ireland). ABI Ireland are a passionate, motivated, and committed group of researchers, case managers and clinicians actively striving to remove barriers for those living with acquired brain injury.

“The primary goal of their research is to achieve better neurorehabilitation services in Ireland for everyone, regardless of postcode.” 

Background to ABI Ireland

Since our foundation, research has been a cornerstone in the development and growth of our organisation, Acquired Brain Injury Ireland. 

We are a national NGO, providing specialist community-based neurorehabilitation to people with brain injury. For more than two decades we have been highly committed to engaging in evidence-based practice and supporting researchers to complete research projects across a range of clinical disciplines in a variety of ways, both internally and externally. 

We had arrived at a point in our development as an organisation where we recognised that we would benefit significantly from setting out our own research priorities. We wanted to play a much more proactive role in determining the research we supported and reflect the contribution of our client group.

Dr Lorraine Crawley

Our Research Ethics Committee (REC) was central to generating this discussion and leading the dialogue in the organisation. To coincide with the development of our overall strategic plan, we established a Research Prioritisation Exercise project to set out our research priorities for the strategic phase 2020-2024.

Despite rolling out the project during the global pandemic, we managed to adapt and implement the plan albeit in a different fashion that we had originally envisioned, in particular on the stakeholder engagement piece with specific focus on the views of our clients and their families.

Main elements of Research Prioritisation Exercise

We developed the project based on several key elements including: 

  1. Conducted a review of other brain injury organisations who were doing similar work on setting our research priorities and focusing specifically on learning how they engaged people with acquired brain injury 
  2. Scanned the formal and grey literature around research prioritisation (in health), public and patient engagement models and engaging people with lived experience 
  3. Completed a scoping review of the past 5 years of research projects engaged in and supported by Acquired Brain Injury Ireland and approved by the Research Ethics Committee (REC)
  4. Engaged and consulted with key stakeholders internally and externally on the research priorities
  5. Completed a thematic analysis of the findings from all stages of the process 
  6. Engaged in a consensus building process on the key themes
  7. Validated the consensus with key stakeholders (people with ABI and family members).
  8. Wrote final report and produced a summary
  9. Disseminated and communicated the findings to all stakeholders.

Involving people with brain injury in the project

A core objective of our project was to engage people with brain injury and their families in the various stages of the project. Their feedback and insights moulded each stage of the process, including:

  • Pilot testing and providing feedback on the draft questionnaire for wider stakeholder engagement 
  • Participating in the stakeholder engagement process (60 per cent were people with ABI/family members)
  • Engaged in the validating the consensus-building that followed the thematic analysis 
  • Advised on all aspects of the communications and dissemination piece including the development of the animation video and graphics. 

Research priorities

Having completed all stages of the project, the following four themes emerged from consultation with our stakeholders. There is no ranking across the four themes as the qualitative feedback highlighted that they are all interlinked. 

Theme Aim
Effective rehabilitationWe want our research to help us improve our knowledge and understanding of what constitutes effective rehabilitation for the person with ABI
Access to brain injury services and the rehabilitation pathwayWe want the research we support to help us to understand how we can improve access to rehabilitation services, and to build a comprehensive understanding of what constitutes an effective rehabilitation pathway
The impact of brain injuryWe want our research to tell us more about the impact that having a brain injury has on the individual, their family, and participation in our society in general
Facts and figuresWe want research to provide data and information on the brain injury population in Ireland, to quantify their needs and make a case for investment in the necessary services across the country

pastedGraphic.png

More than just participants

In setting out our research priorities, there was a recurring theme through all stages of the process: the need to put people with brain injury and their families at the heart of our research work.

It was identified that they must play a vital role not only as active research subjects, but to also influence and be involved with the research project from the design stage right through to the delivery and communication of research results.

Therefore, our research priorities have placed people with ABI and their families at the centre.

We are highlighting to the research community our commitment to working with people with ABI and their families at every step of the research process.

The research projects we support now must show evidence of their Public and Patient Involvement (PPI) plan and give assurances to the REC that they involve people with ABI and their families at every stage of their research proposal. The PPI plan forms a crucial element of the research ethics application.  

Impact of setting research priorities

The RPE has begun to change how Acquired Brain Injury Ireland operates in relation to its research programme for this strategic phase of the organisation.

Operationally, the REC will now have to ensure that all research proposals submitted align with the research priorities. The REC will also ensure that the researcher adheres to the PPI requirements.

The PPI plan submitted by the researcher will have to make it clear how they are involving and engaging people with ABI and their families in all stages of the research.  We amended our REC documentation and increased the PPI membership on our REC.

We are already witnessing the impact on the nature and type of research projects that are being submitted to us. Researchers are engaging with us an earlier stage and co-design is now a feature.

Grainne McGettrick

Therefore, not only is our research focused on priority thematic areas, but with the added co-creation piece, we are now beginning to influence how research gets designed and developed. 

We appreciate that this focus requires some attitudinal and cultural changes in the way researchers work and we suggest PPI resources to researchers to support their engagement with these new processes.  

Communication is key

Communication with researchers about our priorities is key to its success.

We will continue to work to make sure that all potential researchers are aware of our priorities and our essential focus on PPI, prior to them developing their proposal. Communications with key stakeholders, including our university partners, is also key.

To help with the communication we developed a short animation video https://www.youtube.com/watch?v=RuG2Ws_Bilc and developed a webpage https://www.abiireland.ie/i-need-to-know-more-about-research/research-priorities-2020-2024/

Final remarks

The RPE served to highlight our top research priorities to direct our research and organisational strategy.

It will provide opportunities for the organisation to pro-actively pursue research opportunities in our areas of priority, and forge new partnership arrangements with universities, research agencies and funders. 

At the centre of our strategy is the need for emphasis on PPI and this was summarised in a comment from a client stakeholder: ‘See us as more than participants’.

 

 

Newsletter

Sign up for the NR Times newsletter
I would like to receive by email other offers, promotions and services from Aspect Publishing Ltd and its group companies.*

Trending