Pathology Reporting- Enabling patients to self-manage their health

The NHS IT strategy focuses on the power of information to deliver the ambition for patient-centred healthcare.

“ Pathology is an information business.
   Pathologists provide useful answers to good questions.”

Evidence, safety and quality – an information strategy for NHS Pathology (Royal College of Pathologists, 2008)

If pathology is an information business, how can pathology deliver the ambition for patient centered care?

By 2015 pathology reports are to be made available directly to patients. For pathology, reporting is a principal means of conveying information.

‘The move to patient online access to GP records – including test results – by 2015, and eventually to fully integrated electronic health and social care records, will be transformative in the relationship between health professionals and patients, and between patients and their health and wellbeing’ (National Pathology Programme: Digital First: Clinical Transformation through Pathology Innovation)

Currently, pathology reports are sent back to the requesting clinician, who acts as an intermediary between the patient and the information that they would like to know about their  health.  

Here is an example of a typical lab report:

This  pathology report is written in bio-medical code. They are abstract- if taken out of context. They need interpretation- expert clinical or expert patient interpretation. They answer a question posed by a clinician, not a patient or at least mediated by a clinician. Do they deliver information in a format that is patient friendly? Do they answer the questions that the patients really need answering? Do they transform the relationship that the patient has with their own health and wellbeing? Do they enable more active self-management?

NHS England and the RCGP are looking towards self-management to transform the outcomes for patients with long-term conditions and meet the challenge of an aging population.

NHS England and the RCGP support a new model of care for long-term conditions , ‘The house of care’, that also aims to be ‘transformative in the relationship between health professionals and patients, and between patients and their health and wellbeing’

Pathology plays a large part in long-term chronic disease management. Chronic disease monitoring bloods make up more than 50% of all bloods requested in primary care. These blood tests are central to monitoring disease progression and therapies and thus enabling the NHS outcomes framework domains:

Domain 1: Preventing people from dying prematurely
Domain 2: Enhancing quality of life for people with long-term conditions

These blood tests have become systematic care processes in primary following the introduction of blood monitoring processes and targets in the GP quality and outcomes framework (QOF) contract. However, outcomes from QOF have been disappointing, one of the reasons being that it is not enough to just perform a process, such as a blood test,  processes need to be acted on- and ultimately by patients.

The house of care model aims for a transformation of the relationship between health professionals and patients. Information is to be owned by patients, clinicians facilitate a personalised action plan.

Pathology reports can facilitate the house of care model and this transformation of care, by providing reports for long term conditions for patients, not clinicians, and thus enabling patients to self-manage.
Can pathology infographics do this? Can this format deliver information in a way that is useful to patients in managing their own health?

(test report by Dr John O’Connor, consultant biochemist RDE Hospital)

Order comms and chronic disease order sets could facilitate these reports by automatically coding the request as a chronic disease review. Reporting algorthims could be agreed with all stakeholders and the reports could become more personalised as IT becomes more integrated and other measures such a weight and BP are available to the lab to incorporate into the reports.

The reporting IT platform could also be linked to more innovative  patient information, tele-health monitoring or social media self care communities that support each other.
The lab could also agree referral criteria and make onward e-referrals to specialists ie: renal physicians and diabetes specialists (innovative direct referral pathways)

Enabling further innovation:  for cardiovascular disease, diabetes and renal disease, the pathology lab could co-ordinate all care processes into a personalised care report for patients. You could see, for these longterm conditions, at least, the lab taking on the co-ordination of all monitoring processes. For chronic disease, where complexity is low, the lab could   provide better  standardisation of care through agreed reporting algorithms?

This can free up clinical time in primary care to focus on relationships/ action planning and holistic care/ discussion of personalised reports……which may improve outcomes in a way that QOF has not delivered.

What will we need to do to make this happen?

• Good pathology and GP collaboration- in the use of order comms and chronic disease order sets and reporting
• Working on an IT solution to deliver reports that work for patients, primary care and secondary care and enable lean patient pathways and facilitate further patient self-care
• Primary care, pathology and specialist algorithms/ pathways
• Working with patients to find out what they really want to know
• Working with public health and behaviour change specialists, medicines optimisation teams- how should we be presenting information and what information is useful to patients?

Atlas are not Roadmaps - why big data does not lead to change

The recent edition of the Bulletin of the Royal College of Pathologists contains an article by Bernie Croal that discusses the NHS Atlas of Variation. The Atlas of Variation is an interesting project that takes health data from across the country and displays variation graphically. As discussed in a previous blog, pathology requesting patterns can be a rich source of data for analysis of variation. The NHS Atlas looks at a number of examples at a national level, including TFTs, BNP and Ca 125. The article discusses the large variation seen in these requests across the country, and highlights the role that inappropriate requesting, variation in local clincal pathways, and variation in laboratory practices have to play in this. It is probably hard to justify variation, although sometimes this may reflect differences in local availability of other services (eg. access to echocardiography and BNP). But variation is always interesting and should never be ignored. Variation leads to health inequality, and drives the failure demand that may account for up to 75% of health expenditure. The problem with big data approaches like the Atlas are that they are easy to ignore. There are at least 2 reasons why this occurs. It is hard to know what the root cause of variation is (many reasons for variation). The problems are often at a system level that most people feel disempowered to change - and getting to the root causes requires a level of immersion in the problem that few people with the 'power' to make the change are able to achieve. The second related problem is that it is hard to engage those who are nearest to the root cause with aggregate data - it lacks the personal touch and context that is so important. Not only does the data feel irrelevant to an individual, it is easy to dismiss as someone else's problem. And so we return to the concept of the general pathologist. What we need are people who are skilled at analysing data and expressing it in ways that are meaningful to those that are nearest to the roots of an issue. We need people who are skilled at working with these people to understand this variation, and this probably requires a considerable amount of time reviewing case histories, talking about alternative management options, and ultimately discussing with patients what their experiences are. This granularity and personalisation of data is where pathologists can add real value. Working in this knowledge economy is the way that pathologists will help to turn the atlas into a roadmap.

A need for diagnostic medicine specialists in primary care

Pathology laboratories across the UK are in a state of upheaval. Ever since the publication of the Carter report there has been pressure to remove costs from laboratory medicine. The debate is polarised – on one side a group of ‘modernisers’ who look at the unit cost of pathology, note the disparity with benchmark costs on a range of national or international comparisons, and project savings from reorganising and consolidating existing services. On the other side is a group who emphasise the hidden costs of pathology that are often not taken into account in unit cost analyses, point to low total pathology costs in the UK, and strive to protect the status quo of local laboratories linked to local hospitals.

This debate somewhat misses the point – both sides are effectively arguing over the same data - how to minimise unit costs. Although quality is often thrown into the mix, it is at a rather low level of laboratory accreditation, or via the rather poorly defined concept of patient safety. There is, however, a clear opportunity to use this crisis in pathology to reinvent the specialty as one that is fit for the 21st century.
What are the challenges facing modern healthcare? Management of a rapidly growing population living with long term conditions and support of the frail elderly are the two issues that feature at the top of most commissioners lists. How does diagnostic medicine currently support these? For LTC, we tend to provide a reactive service. Order sets from different practices may be wildly different. Every unnecessary test adds to workload and generates the risk of iatrogenic harm. This leads to an additional workload that sits on top of a system that is already under strain. The problem is even worse when one considers how the laboratory supports the frail elderly in the community. There is enormous variation in how clinicians use tests to support their management – this must go beyond the personal preference of individual clinicians, and represents a real quality issue that must be addressed. It is no longer sufficient for laboratories to blindly accept these requests without understanding the behaviours and beliefs that sit behind requesting patterns.

Over the last couple of decades pharmacy has seen similar upheavals, with the role of the traditional pharmacist disappearing in the community. A few far sighted pharmacists realised that they sat in a privileged position to provide a degree of governance to prescribers. They could monitor prescribing patterns, challenge variance, introduce best practice, and control costs. These small teams have now grown substantially as their worth is recognised. GPs highly value this specialist input embedded into their practice, and this is now an accepted part of all practice governance. The parallels with diagnostic medicine are obvious. We can see variation in requesting patterns, and knowledge of diagnostic best practice is a highly valued skill. The increasing recognition that testing adds to workload is now a major driver for most practices to get on top of their laboratory usage. It is not clear whether current laboratory staff have the skills to provide this service, but there is almost certainly something to be learned from talking with pharmacists about their experiences.

Putting pathology at key clinical decision points – the importance of clinical value and developing strong user-laboratory relationships.

By Tom Lewis (Lead Clinician for Pathology, North Devon) and Darunee Whiting (GP and Lead Commissioner for Diagnostics, NEW Devon CCG)

The concept of ‘value’ is increasingly being used in healthcare. Essentially, ‘value’ describes a willingness to pay for a service. In pathology, one can consider value to reflect the utility of a test (ie. its ability to inform patient management), offset against costs of the test (both financial, but also in terms of patient and user acceptability).

While diagnostic tests can enhance patient management, it is clear that diagnostic tests are often used in a way that fails to deliver value to the patient (ie. inform good, timely management). There are a number of ways in which diagnostics may fail, despite high quality internal laboratory performance, for example:

Pre-analytical

• Test that could inform management not used at correct time
• Inappropriate test for condition, leading to wrong management choice
• Test not carried out appropriately, leading to erroneous result
• ‘Shifting the burden’. Performing a simple, but inappropriate action as a way of delaying a harder, more appropriate action. This is seen in pathology as :
  • Inappropriate action in place of testing (eg: prescription/ referral/ admission). Maybe due, for example, to difficulty in accessing test, or time delay from test to result.
  • Inappropriate testing due to difficulty accessing other more appropriate action (eg. other test/ prescription/ referral/ specialist review/ intervention).

Analytical

• Time frame of testing does not match time frame of clinical decision

Post-analytical

• Test not acted upon appropriately

For a pathology service to deliver true value, it is important to recognise that tests cannot exist outside of the system in which they are performed. Thus, an accurate test that is either inappropriately requested, or inappropriately acted upon, has little or no value, and may indeed result in harm (negative value). A high value test is affordable, acceptable, and supports key clinical decisions.
The logical conclusion of these issues is that pathology tests cannot sit outside a diagnostic framework that places the test firmly within its clinical context.  To determine this context, pathologists must work closely with all users who have an interest in the area under discussion, to understand how pathology services can best support key decision steps (deliver value).
Failures of the healthcare system can be thought of as occurring whenever there is a failure to deliver maximum value to patients, on a consistent basis. System failures may result in direct harm to patients, but also lead to problems with sustainability.  Importantly, pathologists may be well placed to see these system failures.  System failures may manifest to pathology services in a number of ways:

• Variability in test requesting between users
• Unexpected changes in demand
• Clinically inappropriate test requesting
• Data from other areas (eg. referrals / admissions / prescribing) where inappropriate testing has ‘shifted the burden’

In future blogs, we will discuss a number of examples in which pathology services have identified system failures, and then worked with primary care practitioners, and other health professionals, to develop diagnostic frameworks that support key decision steps and deliver high levels of value to the patient.

Diagnostic Builders - Chaos in the Brickyard

By Tom Lewis after Bernard Forscher for original concept and with thanks to Brian Nosek for posting this.

Once upon a time, amongst the activities and occupations of medicine, there was an activity called Laboratory Medicine, and the performers of this activity were called clinical pathologists. In reality, however, these men were builders who constructed edifices, called diagnoses, by assembling bricks, called test results. The work of builders was much valued by the architects, or doctors, who planned great cities but lacked experience in the detailed work of assembling edifices that were safe and that were useful.

Now, when the bricks were sound and were assembled properly, and the ground upon which they were placed was chosen with care, the edifice was sound and brought pleasure, as this work was seen as useful. If the bricks were faulty, or the edifice constructed badly, or the ground was poor, the edifice would crumble, and this kind of disaster could be very dangerous to innocent citizen users of the edifice, as well as to the builder and architect who could be destroyed by the collapse. Because the quality of bricks was so important to the success of the edifice, and because bricks were so scarce, in those days the builders made their own bricks. The making of bricks was an expensive and painstaking undertaking and the wise builder avoided waste by making only bricks of the shape and size necessary for the enterprise at hand. The builder was guided in this manufacture by a blueprint, called a diagnostic question. This blueprint arose from long and detailed conversations with the architect, and required a deep understanding of the purpose of the edifice.

It came to pass that the builders were sorely hampered in their tasks by difficulty in obtaining bricks. Thus there arose a new skilled trade known as brickmaking, carried out by laboratory technicians, to give the artisan proper pride in his work. This new arrangement was very efficient and the construction of edifices proceeded with great vigour. In spite of the separation of roles, bricks were still made with care. In general, brickmaking was done on a custom basis because it was a difficult and expensive process.

And then it came to pass that a misunderstanding spread among the architects (there were some who said that this resulted from careless training of a new generation of architects.) The architects became obsessed with the making of bricks. When reminded that the ultimate goal was the edifices, not bricks, they replied that, if enough bricks were available, the builders would still be able to select what was needed and continue to build edifices. The flaws in the argument were not readily apparent, and so, with the help of the brickmakers, amazing things happened. The expense of brickmaking became a minor factor because large sums of money were made available and the time and effort involved in brickmaking were reduced by ingenious automatic machinery.

And so it happened that the land became flooded with bricks. It became necessary to organise more and more elaborate systems of storage for all these bricks. And then some people noticed that structures could now be produced very cheaply if builders were no longer needed. Without builders, there was no need to consider blueprints, and architects could assemble their own edifices. Sometimes these edifices were good, but often the architects lacked the skill in selecting the right bricks, and did not choose the right ground on which to assemble their edifices. Sometimes citizens, who had been previously happy without the need for an edifice, were tempted by the architects to use these new cheap and readily available structures. The architects thought that they were doing these citizens a great service, but in fact these piles of bricks that resembled edifices could then do great harm to the citizens that came to use them.

Throughout this, the brickmakers retained their pride and skill and the bricks were of the very best quality. The brickmakers found that they became poor if they discouraged the architects from building edifices without a blueprint, and so they continued to produce the high quality bricks that the architects were demanding. In order to compete successfully with other brickmakers, production emphasised those sort of bricks that were easy to make and only rarely did an adventuresome brickmaker attempt a difficult or unusual design. As it was sometimes difficult to tell the difference between a pile of bricks and a useful edifice, the influence of cost in brick production methods and in types of product became a dominating factor.

Unfortunately the builders were almost destroyed and the blueprints were lost. It became difficult to find the proper bricks for a task because everyone had to search through so many. It became difficult to find a suitable plot for construction of an edifice because the ground was covered with loose bricks. It became difficult to complete an edifice because as soon as the foundations were discernible they were buried under an avalanche of random bricks. The architects found they were spending a lot of their time trying to correct problems with the structures they were creating, and this made them unhappy. And saddest of all, sometimes no effort was made even to maintain the distinction between a pile of bricks and a true edifice.