The National Data Guardian (NDG), Dr Nicola Byrne, has recently published guidance with an aim to support organisations in carrying out public benefit evaluations when they are planning to use or allow access to data collected during the delivery of care for planning, research and innovation projects.
The guidance is delivered in a blog entitled ‘What do we mean by public benefit? Evaluating public health benefit when health and adult social care data is used for purposes beyond individual care’.
Without clear and consistent interpretation, the NDG highlights that it is difficult to describe what constitutes as public benefit, which makes it difficult to apply a standard approach. “The lack of a shared interpretation by organisations evaluating public benefit can lead to duplication of the same public benefit evaluation, creating unnecessary delays,” she states.
Acknowledging that it is “not a technical concept that can be reduced to a neat formula”, the NDG carried out a targeted public dialogue to determine how public benefit should be defined.
By investigating public values, the NDG says: “We have been able to develop guidance that provides a clear interpretation of public benefit – one that can be applied consistently by those evaluating the public benefit of secondary data uses.”
The research demonstrates that for the public to consider a secondary use of health and care data acceptable and appropriate, that use must deliver benefits back to the public.
On the aims of the evaluation, the Department of Health and Social Care states: “It is intended to create a shared understanding of public benefit across the sector. The goal is to improve and standardise evaluations to support better and more consistent decision-making by data custodians about who can access the data they hold, and for what purposes.”
Guidance from the National Data Guardian
The blog states that there are two aspects to public benefit evaluations; the public aspect, and the benefit aspect. Evaluation of the two can often overlap.
With regards to the public aspect, the NDG notes: “The project or initiative that is applying to use data must be motivated by intention to benefit the public, or a section of the public. What constitutes a sufficiently sized population or group will vary from purpose to purpose, and so needs to be evaluated case-by case.”
The benefit does not need to apply to the majority of the public, she notes; it is still considered public benefit even if it only applies to a small number of people, particularly where it can still have significant impact. “Where NHS and social care organisations will benefit from a use of health and care data, this can also be regarded as a benefit to the wider public – even though the benefit may be indirect,” Dr Byrne states.
The blog continues to indicate that people are more concerned about public benefit when health and care data “is being sought by a commercial organisation that stands to profit from its use”. If the commercial organisation’s profit is the only benefit, then use cannot be deemed for public benefit. However, “the generation of proportionate commercial profit may be acceptable to the public if the use also delivers a public benefit, such as improved services or improved NHS knowledge and insights.”
When assessing proportionality, the NDG says, “the public benefit evaluation process should ask the data applicant to provide a transparent assessment of how the commercial interests are proportionately balanced with the benefits to the public.”
For the benefit aspect, the blog states: “Society can derive significant benefit from the use of health and social care data for reasons over and above the delivery of people’s individual care, such as NHS service planning and research into new treatments. Public attitudes research tells us that people feel society stands to lose out if health and social care data is not processed in support of these important secondary uses.”
The blog acknowledges that people have “identified a spectrum of purposes that can be considered for public benefit”, such as improving and saving lives or developing better healthcare outcomes. “However, people were also prepared to recognise less obvious and more abstract benefits, such as knowledge creation and exploratory research. This also included initiatives where the intended benefit might take a long time to materialise.”
Types of benefit
The public dialogue went on to demonstrate that people think the concept of public benefit should be “broad and flexible and include direct, indirect and long-term benefits… the benefit needs to be identifiable, even if it cannot be quantified or measured”.
The blog includes a list of suggestions that aim to capture the spectrum of public benefit as identified by the public dialogue, though the NDG emphasises that the list is not comprehensive. Some of the suggestions include: helping systems to better understand the health and care needs of populations; leading to identification or improvements of treatments, interventions, or system design; helping to manage response to communicable diseases and other risks to public health; advancing understanding of regional and national trends in health and social care needs; and better informing the planning of services and programmes.
The blog acknowledges that in some cases, data use delivering a benefit to the NHS may also deliver a benefit to private or commercial organisations. The public dialogue generated positive answers to the following questions, in order to help determine whether the purpose can be considered for public benefit. Again, the list is non-comprehensive.
- Will any private profit or progress made by a commercial organisation also lead to benefits for the health and care system that will ultimately benefit patients?
- Where a commercial organisation makes private profit or progress that serves its own interest, is the agreement that underpins its partnership with the NHS based on fair terms? Does that agreement recognise and safeguard the value of the NHS data?
- Will research findings be openly shared with others who can use them to maximise benefits to patients, the wider public, and the health and social care system?
Data recipients should be prepared to demonstrate what public benefit their data use is delivering, the NDG comments, and this should happen “at such intervals as specified by the organisation providing access to the data. It should also be in a form that can be readily shared with the public…. this is particularly important where the data recipient is seeking renewed or additional access to data, as they should be able to demonstrate some public benefit from the date use up to that point.”
Dr Nicola Byrne, added: “This vision relies on earning the public’s trust in the use of their data by those who can unlock its potential to deliver improved healthcare services and develop new and improved treatments.
“Public engagement consistently confirms the need for use of health and care data to be of benefit to the public. Thus, better evaluations of how the public will benefit from projects which use health and care data for planning and research are a key aspect of earning public trust. Following this guidance will help organisations interpret and apply the concept of public benefit in a way that accurately reflects people’s views on how trust is earned in this context.”
The blog goes on to share risks to be considered when interpreting public benefit along with case studies to support evaluations. It can be read in full here.