The importance of patient insight
The insight we can get from patients, users and the public – from engagement, participation and involvement activities, feedback and surveys or through simply listening and observing – should be central to the business of the health and care system.
An organisation informed by intelligence from its users can:
- use insight to improve the quality of services
- design better services and pathways based on users’ experiences and expertise
- plan services around the population and people’s health and care needs
- understand its populations and the place health plays in their everyday lives.
The NHS’s move towards integrated care systems offers an excellent opportunity for local areas to use insight and feedback from patients and users and to co-ordinate that feedback across pathways of care.
As part of our project on integrated care and patient insight and feedback, we have been learning from interviews, roundtables and direct work with six local areas how to understand the full potential of patient insight within integrated systems. We are supporting six sites in an ongoing project that seeks to learn how the points raised in this article can be addressed.
Here we share what we have learnt so far, explore some of the current challenges for gathering insight from patients, users and the wider community, consider where we can get to and how integrated care systems can drive this.
Interpreting and acting on patient insight
The health care system collects a huge amount of insight and feedback from users at local and national level but does not do enough to interpret – and more importantly act on – what it tells us.
In 2001, the NHS led the way by introducing national patient experience surveys to all trusts. In comparison with other systems that do not have any national mechanisms for collecting information about patients’ experiences of care the NHS scores highly.
While there are many positive local initiatives to encourage listening to patients, our interviews flagged some challenges for the wider system. Terms such as patient engagement and patient experience have slightly different meanings, but they are both ways of listening to and understanding users of services and the wider public. Too often, however, they are separate functions. For example, gathering information about patient experience is often the responsibility of the nursing directorate of a trust, whereas patient engagement will be part of the wider communications function. Both are gathering insight from users of services and the wider public, but the learning is often not shared.
Furthermore, these functions are often separate from those who can make best use of the information; clearer links need to be made to those who should be using what is learnt whether that be managers or clinical staff.
At present much of the effort in this area goes on collecting feedback from patients and users rather than on using the learning to inform decisions, make improvements and design services. The focus needs to move beyond collection to acting on what the information means for health and care systems and the populations they serve.
Sharing what we learnt
Partners within systems should start to share information, working together on what it means and how to act on it.
At present much of the feedback that is collected from patients is specific to individual services – general practice, hospitals, community services and social care – but there is little understanding of how these services work together for users. Sometimes intelligence collected by individual organisations offers insight on other services. For example, we heard from an acute care provider that had conducted a patient engagement exercise from which it had gathered a lot of insight about primary care. However, there was no mechanism for the organisation to share that insight with relevant colleagues in their local area.
The current national survey programme is also set up to measure experience of individual services – for example through the GP Patient Survey and the Inpatient Survey. This is also true of the Friends and Family Test. It is challenging for national surveys to measure experience across a pathway in a single provider or between several providers. There is a risk that the tools for measuring patient experience continue to fail to capture the full complexity of users’ journeys.
There was a clear sense from those we spoke to that insight from patients and users is often seen as ‘soft’ data compared to other ‘harder’ performance measures such as waiting times targets and financial data. Moreover, insight is not always believed. One leader told us that there are two ways the NHS treats feedback from users, ‘Either they say, “We knew that already.” Or else, “It’s wrong.”’. Moreover, patient and public engagement is still seen by some as something that ‘has to be done’ rather than providing key insight and understanding into local populations and their needs. It is still too often seen as tokenistic.
Insight needs to be seen as equally important to other routinely collected data and become a key part of the intelligence function of new systems. This requires leaders to place sufficient emphasis on listening to and working with their users and to ensure there is sufficient capability and capacity both to process the feedback and to use it to inform decisions, make improvements and design services. Gathering insight needs a range of skills including analytical capability, methodological understanding and communication skills to disseminate effectively what the results mean.
A system-wide move towards integration offers an opportunity to put insight at the heart of health systems by using this information to design better services.
The move towards integrated care systems (ICSs) is the time to address some of the challenges outlined above. Organisations can start working across boundaries by understanding what happens to patients beyond individual interactions with services. For example, areas we spoke with were considering how they might use patient insight to increase their understanding of high readmission rates and what happens to individuals between and across services. Healthwatch England argues that qualitative collections of patient experiences can augment routinely collected readmission data, helping us to understand patients’ views and their wider environment.
In a recent blog, Michelle Dixon, Director of Communications at Imperial College Healthcare NHS Trust, argued that public engagement should be a continuous discussion not a one-off event. Fully integrated systems should consider insight from all the sources available to them – patient and public engagement, patient experience, quality improvement – as part of their continuous conversations with their population. Every conversation is an opportunity for a system to learn, but they must want to listen. It has to be seen as everyone’s business, not just the remit of the patient engagement or patient experience teams.
As new systems are set up there is an opportunity to consider a more strategic approach to patient insight and to begin to break down the false boundaries that can exist in how the health and social care system hears from the population it serves.
It's not just one method
The conversation needs to move from a debate on the right methods for collecting feedback to one about what a range of sources tells us about our users.
A range of methods are available to collect insight, and choosing the appropriate approach may depend on what the information is needed for. For example, organisations may want to know what matters to their population to help them set their priorities, or they may want to create tools for service improvement. No single method can answer everything health and social care systems need to know. Moreover, some methods will be more or less suitable for different groups in society and thought needs to be given to choosing methods that are appropriate both to the question being asked and the people being asked it. There is a need to become more familiar with the range of methods available, from traditional surveys to ethnography to analysing online feedback rather than reaching for the same tools to answer every need. The system should also be looking to how other sectors collect insight and bring innovation in where relevant.
Furthermore, we found that local systems are not always aware of the wealth of information that is already available either locally or nationally. More must be done to make use of what is already known, working alongside Healthwatch and local community groups. This will also avoid duplication of effort and highlight gaps in understanding. In some areas different teams are conducting very similar patient engagement exercises but are not aware of the each other’s work. New systems can start to map what is already known and to join together on relevant work, avoiding duplication.
An opportunity to do things differently
New integrated care systems (ICSs) offer an opportunity for health and social care systems to think differently about how they collect, listen to and act on insight and feedback, moving it from being a ‘nice to have’ to an essential part of how they work.
With growing levels of multi-morbidity, one individual may be in receipt of half a dozen or more visits a week from different professionals. This may affect that patient’s ability to get out of the house and see friends and family, resulting in a deterioration in their mental health. The patients’ experiences of each individual service may be positive and measured as such by the individual organisation. However, there is no opportunity to measure how the patient feels about their care overall. It is only by understanding the whole story that we can redesign services to be more efficient and improve the lives of patients.
As we move towards integrated care, the health and care system has to hear from patients in a more joined-up way. Data needs to be shared more systematically both across and between organisations; partners, including the community, can then come together to plan and design services that are based on an understanding of the populations they serve.
Local government inclusion
The inclusion of local government in integrated care systems represents a significant opportunity to include social care, public health and wider population health, bringing the relevant skills that they have.
The NHS cannot do this alone. Generally, local government has a more direct relationship with its citizens and has a different understanding of insight. Bringing these skills together with the work already done in the NHS will only increase capacity, capability and understanding in the system overall.
There is also clearly a role for patient insight suppliers to provide some of the services needed and it is key that the right market and frameworks are developed so the NHS can intelligently commission additional expertise from these suppliers.
As local areas explore better ways to deliver care, they need to understand that integrated care is fundamentally about the relationship that local care organisations have with their population. Having this conversation together with partners, patients and the public is the only way for it to be a success.
Dear Mrs R,
I am so sorry to hear of your distressing situation. We would suggest contacting the Patients Association (https://www.patients-association.org.uk/) for further support.
Please please some one help ccg who is I charge of their staff covering up from a trust that isn’t taking complaints where a disabled child left with Abnormal x Ray left in pain yet the trust has failed to act legaly i under nhs complaint last policy and ccg telling untruths saying they aren’t responsible for them
You contact nhs England they put the phone on you as they say the ccg should be investigating this complaint it’s not their job
I have a freind who is a commissioner in another area she knows this unlawfull what’s happening but the ccg refuse and even say they don’t have to make reasonable adjustments
I now have ptsd through the sheer bullying within this situation I have child that has cerebral palsy that on agony
This was October he went for x Ray provided a dr in feb chat on phone no video link of face to face told us he was too busy to look at his file to get the information he needed even though he called 45 mins early
When we challenged this poor duty of care how Could he make a clinical judgement on a abnormal x Ray he said he would refer on
Pals of lister hospital say they don’t take complaints QQC Mark them as need to improve yet ccg refuse to act they will not take any complaint or fail to act
I strongly welcome this article on Joined Up Listening. Its description of how much more local health and social care systems could and should be doing to hear about people's "journeys" through and in and out of the system and then act on what has been heard is spot on and very relevant for my area. We have been saying locally that a key test of whether anything better comes from integrated care is whether developments are based on learning from people's whole experience.
An interesting read and some important points are very well made. As someone who promotes coproduction and collaboration with local people as equals I have a few thoughts;
"Different terms are used to describe ways the health and care system works with patients, users and the public: patient engagement, involvement, participation, co-production, insight and feedback, market and social research and patient experience data. Each of these has a slightly different meaning..."
In m opinion that have significantly different meaning and are experienced very differently - power relations and agency being key.
"The conversation needs to move from a debate on the right methods for collecting feedback to one about what a range of sources tells us about our users."
So, language and tone is paternalistic/medical in places and the article doesn't recognise the expanse of work that I know has taken place nationally to challenge the outdated cica 1950's "doctors lens" that can still be used across the NHS when referring to patients and carers. In places it reflects the hierarchical institutional structures of the 20th century - not the networked flattened structures that we occupy today. 21st century patients and carers have agency and are not passive or "belonging to" the NHS - but must be active members of the team and agents in their own recovery and wellbeing. In the Whole Systems Integrated Care project in NWL London great work was led by local people in 2015-16 who addressed these outdated terms in partnership with the comms team.
*Had this article been written in collaboration with a patient or carer the simple language/tone issues may have been flagged. See Becky Seale's connected Kings Fund publication from 2016 - its really great!
Outside of these small points I think that the article is important. It highlights the very real problem communities have been complaining about for years - that information/data doesn't always make the difference it should. That what is uncomfortable to hear is often filed away or re-worded when written up. As we say.." S/he who holds the pen holds the power"
Additionally, when you ask local people what they want and it is at odds with "top down NHSE or public health drivers" commissioners and providers struggle to deliver - their deliverables need to meet set criteria. Much of what people talk about isn't medical - its relational and social, it's about being hungry, benefits, housing and a living wage. It simply isn't the business of the NHS - but no one else is asking. It asks about things that the NHS doesn't do. I would ask what does the NHS do with the data it collects about hunger,
And while Im on the subject of "top down" would who ever it is at NHSE who pushes hugely unrealistic deadlines on commissioners and providers that makes the task of "engagement or coproduction" with local people almost impossible - please STOP... and have lunch with the authors and the NHSE department that promotes it. That lunch would be on me.
... in short a very welcome piece. If it had been written collaboratively with a patient or carer, IMHO it would have been stronger.
True, open and non-hierarchical engagement still remains a serious challenge. It cannot be delegated to HR or in a department;
nor can it be limited to a newsletter which all too often paint rosy pictures. It involves everyone involved in an open, genuine and non-threatening conversations. Many organisations outside the NHS do that. We just need to learn from. It also takes real leadership
At last I feel someone is listening. The Public, Patients and Carers know where the 'failure' to deliver comes from, the problems arise because so called LEADERS think they know better!
I have three COMPLAINTS with OMBUDSMAN, they are being investigated in 'isolation' of each other? one complaint against the DWP and NHS England with the (PHSO) the other with the LGO against a LA all about the same SUBJECT. 'duty of care' 'safeguarding'' failure to implement the contents of the Care Act 2014/5recgnising Carers Legal Status, failure to provide Personal Budget, 'Patient Centred' Patient Choice' 'Holistic' Section 117 FREE Aftercare. NEGLECT.
The LGO and PHSO are 'not fit for purpose' complaints are investigated via a 'tick box' if the complaint doesn't 'fit' the box, then ignored.
The patient or someone acting on their behalf with their permission is the only acceptable COMPLAINANT, this leaves those responsible to continue to 'abuse' the system in order to WIN the argument in the name of 'Self Preservation'.
The Care Act 2014/5 probably saved the day, because Carers have LEGAL status: first you have to prove what you do for the patient to satisfy your position. 'Statutory Instruments' Social Care Act 2014/5' 'Carers/Patients' 'eligibility' is written in 'stone'.
Carers Legal status is 'defined' in LAW no AGENCY can deny what you do for that person, not even the Patient, often 'brainwashed' by LAs.
The LGO/PHSO Complaints form have no question relating to a CARERS Complaint; without persistence in quoting the LAW. Patients (who have no idea on their rights) will continue to be 'abused' by a system that is NOT 'fit for purpose.
Many 'vulnerable' are 'slipping' through the 'GAP': one, because you really need to know just about everything about the LAW relating to an 'integrated' system, when challenging a system that does NOT have a 'single' complaints system. albeit in 2007 it was made possible!
Can you believe that at this PRESENT time a CARER cannot complain about an 'abuse of the system' taking into account 'safeguarding' 'neglect' 'person centre' 'patient choice' holistic' despite having the EVIDENCE, because the 'vulnerable' individual has NOT complained themselves, or given permission for someone else to complain on their behalf. The CARER can only complain about how it has effected them??
The above should be read very carefully, it 'highlights' the here and now of a system of 'integration' that can continue to abuse the rights of the vulnerable patient, and the LGO/PHSO not having an Complaints form 'fit for purpose'.
I am shortly to meet with Healthwatch, who contacted me after I alerted them that from 2019 those suffering Mental Illness and Autism will be entitled to a BLUE BADGE, this has 'highlighted' another problem in my area, only those NOT 'fit to drive' are awarded a BUS PASS.
Those in receipt of middle to higher rate 'enhanced care' of PIP are able to obtain a DISABLED TRAIN Ticket (third off) Carer the same, TRAVEL ANYTIME. This is worth applying for.
CINEMA Discretionary entrance. Carer goes FREE.
National Trust also provide discounts entrance ANNUAL Subscription for those with a Disability, others with them go FREE.
I could continue, but I think I have made my point.