Research with the Royal College of General Practitioners (RCGP) to learn about primary healthcare professionals’ views and expectations around the use of patient data.
Why primary care?
Primary care is many people’s first point of contact with health services – and is often seen as the backbone of the healthcare system. To deliver personalised and integrated care, the use of data is instrumental, not only in providing individual care but in enabling planning and research to improve outcomes.
The primary care data ecosystem also continues to evolve. The Covid-19 pandemic highlighted the importance of data use and the Data Saves Lives strategy outlined clear commitments to build transparency about how data is used and make appropriate data sharing the norm across health, adult social care and public health.
About the research
We commissioned a team at Mott MacDonald to carry out this research. The views of a range of primary care professionals were captured through interviews with 37 stakeholders and a survey with 111 respondents.
Whilst some of the individual findings from this research may be familiar to primary care professionals, there is value in considering these factors in a systematic way. Understanding the factors which influence attitudes and shape behaviours is important for those planning or implementing a data initiative in this area.
As part of this work we also developed a checklist for teams planning or implementing a data initiative, to help them assess the factors that will shape how it is received. We hope the checklist is a useful tool to help users proactively consider these factors and promote early consultation with the primary care community.
In response to the report, Dr Nicholas Thomas, Clinical Lead for Research at the RCGP said: "This important research provides an excellent summary of the perceptions around health data, its uses and how it's kept safe. Understanding these issues is valuable to all healthcare teams designing new programmes and this project comes at a key time in the ever-changing landscape of primary care. The checklist is a clear and effective resource that could be used to assess new (or existing) healthcare data programmes".
The headlines
1. People’s attitudes are heavily influenced by where the data goes
The primary care professionals we spoke to or contacted felt most comfortable using and sharing data across their practice and primary care network (PCN). This is true whether the data is used for individual care, research or planning purposes.
The appetite for sharing data reduced as it moved further away from the practice to the local integrated care system, wider NHS and beyond. When sharing data within the integrated care system or NHS, only just over half of survey respondents felt comfortable sharing data for care and coordination and planning purposes. When sharing data beyond the NHS, to a trusted source or third-party organisation, only one in five survey respondents felt comfortable sharing data for care and coordination purposes and less than two in five for research purposes.
Even for those that are generally more supportive of the use of data, their views will vary depending on certain conditions. These include:
- the purpose for which data is being used
- who will have access to the data
- who the beneficiaries of the use of data will be
- that data will be appropriately safeguarded
2. There are dynamic factors which inform these attitudes
There are a range of factors which influence the attitudes of primary care professionals to use and share data. Michie’s COM-B model (Michie et al, 2011) has been used as the framework to consider these, considering capability, motivation and opportunity.
Capability
For GPs, and particularly those GPs who may be partners, the contractual and legal responsibilities of information governance and data protection strongly informed attitudes.
Whilst nearly all professionals said they understand these information governance requirements, there are challenges in navigating these and accessing support.
Challenges in the technical capability of systems and data quality also informed views. Interestingly, one person explained how a system, developed for the purposes of research and planning, is “so secure it is unusable and actually provides a barrier to research and planning”. Similar frustrations were shared by a number of other respondents too.
Motivation
Across the spectrum of primary care health professionals, there is a strong sense of responsibility for safeguarding of patient data, alongside a view that data sharing is needed to provide the best quality patient care possible.
One person summed this up nicely when they said: “I think if you ask the individual GP you know do you agree with the statement ‘data saves lives’, you know they will. [If you then said] OK, well, give me your data. No, absolutely not. And so there a disjunction here between our belief that the data should be available… how we go about doing that and keeping everyone safe”.
Without developed capabilities however, this responsibility as a custodian of data can become a demotivating factor for data sharing.
Opportunity
Time and resources in primary care are clearly a current constraint to data use. Less than one in five survey respondents reported that they had the time and resources to effectively use the research or insights that had been derived from analysing data.
The extent to which professionals feel confident using data and willing to participate in research and improvement studies is affected by a range of different factors. These include practice culture, clinical leadership, effective practice management and previous involvement in data projects.
Participants explained that these factors cause a lot of variation across different areas, with one person saying, “the development in PCNs is very much varied, with some being much more developed and some areas being much more proactive in terms of sharing data or being comfortable with the sharing of data or having those agreements in place to be able to do so”.
3. Overcoming barriers
For primary care professionals to feel confident in the way patient data is used, it is important they are consulted and considered early-on in the design and implementation of data related initiatives.
Other interventions which could help include education and training, for example on information governance processes or on coding and the importance of record curation. More visible support from Data Protection Officers or Caldicott Guardians, or sample templates for data sharing agreements and Data Protection Impact Assessments (DPIAs) are also important. We’ve outlined these in more details in the report.
The data and digital landscape is evolving, which means there are opportunities for these kinds of interventions to be embedded when new initiatives are rolled out. Many are already being considered as part of the implementation of the National Data Strategy and the Long-Term Plan. This includes strengthened communication with health professionals and the public about General Practice Data for Planning and Research and the need to simplify information governance arrangements.
This learning is brought together in a one-page checklist, to help teams proactively consider the range of questions primary care professionals may have about a new data initiative.