Cracking the Care Home Data Code: How to Improve Research Collection
"Uncover strategies to tackle data collection challenges in care homes and ensure successful research outcomes."
Research in care homes is vital for enhancing the quality of life for residents, informing best practices, and shaping effective policies. However, conducting research in these settings presents unique challenges. From gaining staff buy-in to managing data collection logistics, researchers face a complex landscape that demands careful navigation.
A recent study, the Falls in Care Home (FinCH) study, involving 87 care homes and over 1600 residents across the UK, sheds light on these challenges and offers valuable insights. The FinCH study aimed to collect data on various measurements, including falls, medication usage, and access to primary care services. By examining the hurdles encountered during data collection, the study provides a roadmap for future research endeavors in care homes.
This article delves into the key challenges and facilitators identified by the FinCH study. It offers practical strategies and actionable recommendations for researchers, care home staff, and policymakers to improve data collection processes and foster a more collaborative research environment.
The Care Home Data Challenge
Research in care homes is increasingly complex, involving ethical approval, access through gatekeepers, informed consent, and data collection from residents. Care home organisations already collect extensive resident-level information for their own uses, but privacy and data protection concerns can hinder data sharing. The FinCH study also identified practical challenges involving staff buy-in, communication, and expectations.
Building a Research Foundation
Care homes are a common place of death for older adults, particularly those with complex health needs or dementia. The need for representative, internationally comparable data on care home facilities and residents has long been recognised, yet identifying and collecting these data can be challenging and underreported. More recent approaches emphasise partnerships with long-term care communities, adapting methods for hard-to-reach participants, and minimising burdens during recruitment and data collection.
Common Roadblocks in Care Home Data Collection
One of the primary obstacles identified in the FinCH study was a lack of engagement from working-level staff. Many staff members felt overburdened and viewed the research activities as an additional strain on their already demanding workloads. This sentiment was often compounded by conflicting priorities, such as the implementation of new care schemes.
- Limited Staff Buy-In: Address staff workload concerns and highlight the study's benefits.
- Communication Gaps: Clearly communicate study goals and address staff concerns.
- Insufficient Training: Provide research method training to care home staff.
- Unrealistic Expectations: Ensure data collection timelines are feasible for care home staff.
From Records to Minimum Data Sets
The DACHA pilot recruited 996 residents from 45 care homes, with data from 727 residents included in the minimum data set. Researchers linked residents’ digital care records with statutory health and social care data sets, producing a viable minimum data set prototype with metadata as a resource. Hanratty and colleagues report that care home organisations already collect extensive resident-level information, suggesting that future social care records or minimum data sets could begin by reviewing existing collection practices.
Testing Implementation Before Expansion
The proposed care home minimum data set still requires evaluation of its effects on resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use, and digital technology implementation. A qualitative implementation study aimed to link NHS England administrative health data and statutory social care data with care home digital care records, while adding structured measures on resident needs and quality of life. Public involvement work on collaboration around a minimum data set also highlights the importance of developing lessons for future research projects.
The Research-Ready Network Model
A national network of research-ready care homes used both corporate engagement and individual invitations to recruit participating homes. In its second phase, the network recruited 141 care homes. This model illustrates how organised relationships with care providers can support research access across multiple settings.
Building Bridges: Fostering a Collaborative Research Environment
The FinCH study underscores the importance of building strong relationships between researchers and care home staff. By implementing a comprehensive communication plan, providing adequate research training, and addressing staff concerns, researchers can create a more collaborative and supportive environment. This, in turn, will lead to more accurate and reliable data, ultimately benefiting the residents and the broader care community.
Making Inclusion Ordinary
Underrepresentation of care home residents in research has contributed to a poorer evidence base for health care in care homes. Residents face fewer opportunities to participate, while assumptions about their interests or wishes can further restrict inclusion. Advance Research Planning is conceptually interesting, but its implementation in care homes presents significant challenges.
A Changing Research Landscape
Care home research is undergoing significant transformation. The cited emerging-trends overview attributes this change to technological advancements, demographic shifts, and evolving healthcare policies. It describes a field that now covers a broad range of studies, including research on efficacy.
Resources, Representation, and Collaboration
Care home research operates amid pressure to achieve better outcomes with fewer resources, alongside staff attrition during the pandemic and funding shortfalls linked in part to the post-pandemic global context. Care home residents are often excluded from research that could directly benefit them, despite public involvement being important for keeping research relevant to its target population. Systematic-review sources identify public involvement approaches as a key area for understanding and improving collaboration with older adults living in long-term care homes.