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Widening Research Access in Care Homes - a commitment from Research Champions in North East and North Cumbria and Yorkshire and the Humber

Research Champions from North East and North Cumbria and Yorkshire and the Humber gathered for a virtual event on Wednesday 22 September. The event, “Widening Research Access in Care Homes” was suggested by a small working group of Research Champions to see how they can work alongside care homes to promote research, as they felt this was an area that was neglected for research participation and for research studies to focus on. 

The event aimed to hear from the people who are taking part in research in care homes, from the staff in care homes, carers, researchers and staff delivering studies. 

The aim of the event was to understand what is currently in place, what the barriers have been to care home residents being offered the opportunity to take part in research and how people resolved them. 

Sandra Prew, ENRICH Programme Manager began the event by explaining what ENRICH is: “ENRICH was set up to enable research in care homes. ENRICH brings together care home staff, residents and their families with researchers. It provides a toolkit of resources to help care homes make the most of research; and researchers to set up and run studies effectively and collaboratively in care homes.” 

Angus Sturrock, a research nurse in care homes shared his experience of delivering research, as well as how he approaches ENRICH care homes to offer them opportunities for residents to participate. Angus said “I find out a study is coming or recruiting and I will often call care homes that I have worked with and offer them the opportunity to take part. The personal touch works well and means care homes are willing to participate. Having a flexible approach when you are conducting research in care homes [is important], you have to be careful not to interfere with the day-to-day running of the home.”

The event also heard from Rebecca Ridley, a deputy care home manager in North Tyneside, who shared her experience of facilitating research during COVID-19. Her residents participated in VIVALDI and PRINCIPLE and thoroughly enjoyed the experience. 

Rebecca shared some of the challenges, with the staff impact being more on the managers of care homes than carers, with the time to arrange and organise a study being done in the care home being the biggest impact she has experienced. Rebecca shared that residents like doing something different, and aren’t impacted too greatly in the studies they have participated in and have had a good experience, with one resident even featuring on the local news

Rebecca enjoys offering residents the opportunity to be part of research, taking part in research is a good thing to do and thinks all care homes should be open to research opportunities for residents. “Offering research opportunities is not without its challenges, usually from management companies who own the care homes, and can be dependent on resident numbers and relatives. COVID-19 has thrown a new challenge into the mix with testing and protecting residents but it is a challenge that is worthwhile. I want to offer our residents research opportunities.” 

Pamela Harris, a Research Champion from the North East and North Cumbria shared her very personal experience of having a husband in a care home who was diagnosed with Dementia with Lewy Bodies and how research could have positively impacted her husband and herself. In 2012 Pamela did some of her own research, which she attributes to her former career as a nurse, into managing her husband’s dementia, including researching American treatments, such as Vitamin B12 injections. “It felt like I was fighting for my husband and everyone else with a dementia diagnosis for opportunities to improve quality of life and managing Lewy Bodies dementia.” 

Pamela works closely with DeNDRoN and aims to make a difference by suggesting care homes as a place for research to researchers and suggested having leaflets in care homes would be a good route to engage with residents, their families and staff to promote research.

Amrit Daffu-O’Reilly, Senior Researcher from the University of Leeds shared information on the CONTACT study - Contact tracing in care homes using digital technology which is in the pilot stage. CONTACT is a digital version of test and trace for COVID-19, replacing manual tracing with digital contact tracing - everyone wears a device that collects information on contacts between people and locations and the duration of the contact. This could be useful for care homes, where recall can be difficult for many, and the technology could be applied to diseases that depend upon human contact for transmission, such as gastric illnesses e.g. norovirus and other infections . 

Amrit went on to share that as care homes are still recovering from the pandemic, conducting research has not been without its challenges. The main challenges identified include: timing, is the timing good?; Will the care home have capacity and be allowed to have researchers in? The CONTACT study began at the start of the national vaccine roll out and this caused problems, including staffing, prioritisation, insufficient lead-in time, rushed training and staff not being fully in work. 

Amrit said: “Lead in time is key for conducting research in care homes, the lead in time should be used to build a rapport and relationships with the care home and staff, build trust and confidence, assess the capacity and capability of the home to deliver your study. Lead in time should also be used to identify the staff in the care home you will work closely with, not always a manager, we learnt this in the CONTACT study and have built in a longer lead time to facilitate this.” 

Research Champions posed various questions to speakers throughout the event and some of the key points to come from the event include:

  • Do NHS Clinical Commissioning Groups know ENRICH exists?
  • Activities within care homes offer a structure to residents, often providing entertainment, social interaction and purpose,  participating in research can form part of this structure.
  • Consideration needs to be given to any financial implications for care homes and how they can be supported to participate. 
  • Researchers conducting research in care homes need to involve staff, families and residents earlier in the research process, from study design stage to ensure the study is relevant. 

The event will be followed by another event, allowing  Research Champions to come up with some actions they can do to support our goal of widening access to research in care homes. 

You can watch the presentations from the event here.