Most people understand that a car can pass a MOT test (annual test of vehicle safety, roadworthiness aspects and exhaust emissions for vehicles over a certain age) but that result only applies at the time of testing, the car could break down on the way home.
The certificate refers to a “point in time”, it does not give any guarantee that any component will last much longer.
Medical Consultations – a point in time
Similarly, a person might look quite healthy in a medical consultation, appearing alert and well, but the effort of getting there could mean they have to spend a few days recovering. This could be the case for patients with long covid or other post viral conditions. Similarly, a person could have clear screening tests but could develop a cancer the following week.
There are many medical conditions for which the outward signs are not obvious 100 per cent of the time and for which there are no lab tests recognised as giving a definitive diagnosis. In such cases there is a strong reliance on the narrative description of the patient of their lived experience over a period of time. Healthcare professional and clinical observational practice involves asking questions about the reason for the consultation, taking into consideration their own interpretation of the person’s appearance, movement, communication, and demeanour.
Figure 1: A week in the life (allocation of hours) of an individual with myalgic encephalomyelitis M.E. who has to rest a lot before and after going to medical appointments
From the patient perspective, it is expected they will remember the sequence of events leading to the consultation – perhaps these observations could have happened over days, weeks, or months.
There may be problems if the patient cannot remember, or thinks they are recalling accurately but in fact they are giving the medical practitioner an incomplete or inadvertently misleading picture? This could be part of the medical condition, for example brain fog or some early stage of dementia, or it could be simply that they had not appreciated the eventual significance of the observations (e.g., exactly what they had been doing prior to or during the incident).
Maybe if the person had noted specific triggers, it would explain the absence of symptoms at the time of consultation. Similarly, it could be some denial of the progression of illness or an inability to articulate the observation clearly and lack of confidence about being believed.
There are many reasons for inaccurate recall and if the person’s appearance at that “point in time” (10 mins or so) suggests good health, perhaps a busy professional could think something not worth investigating. This may be even more problematic on video calls or by phone. At that “point in time” there appeared to be not much wrong, nothing urgent or serious.
Unknown to the professional, the patient (e.g. with a post-viral syndrome) could have deliberately rested before the visit and post-exertional malaise may have happened afterwards. Yes, some people might appear to exaggerate symptoms, but many others put on a brave face. What were normal activities of daily living, such as getting dressed and washing hair) can take up many more hours than before the covid infection.
Figure 2: A week in the life (allocation of hours) of an individual with long covid (ADL = activities of daily living, Other = low effort activity such as watching TV)
Real world data – public health response to a virus
In the past two years, we have all learned a lot about public health issues related to a novel virus. There will be many books and research papers written about what society and various groups have learned, but we can consider three high level observations:
- Covid-19 is not an equal opportunity virus, it is highly discriminatory – affecting some subgroups more than others but also infecting many asymptomatically and often affecting only some members of a household and not others; likewise, long-covid
- People value their freedom and are often, but not always, willing to make short-term sacrifices and adopt preventative/protective behaviours that would pre-2020 have been unimaginable in their community
- Real world, near real time learning has become essential and data directly obtained from patients has informed policies and practices rather than relying on textbooks and peer-reviewed journals – patients have been much more highly engaged with “health-related data” than ever before. This includes contributing the data but also searching for new scientific explanations.
Covid infection results, deaths, hospitalisations, and vaccination were reported daily. Patients also reported their symptoms and covid-status daily via apps (e.g., Covid-Zoe), this gave a dynamic picture of the spread of the virus by location and demographics.
Data is the new oil – it must be refined and transported
Raw data must be captured, transported, stored, analysed, and interpreted. Like oil, there are different qualities and uses. It must be in the right place in the right form to create value. Covid-19 highlighted the need for speed as the virus can spread so easily, emphasising the need for radical changes in behaviour. Some health data needs real time processing, other health data needs near real time or batch processing and we must get the right data to the right person at the right time.
In technology and health terms, we must distinguish between
- Real time data – real-time responses often take place in milliseconds, and sometimes microseconds. It is often processed as the user enters it and available for use immediately after being generated. A bank ATM is one example. In a surgical procedure, or in a life-saving situation (e.g., on a ventilator), there will be real time monitoring of vital signs.
- Near real time data – speed is important, but you don’t need it immediately. This can be minutes, hours or days depending on the. Remote monitoring of sensor data is often not reviewed and acted upon instantly, but it gives a picture of recent history. A lateral flow test is a near real time test, you do it when you need to – the result is available in 30 minutes.
- Batch – waiting hours or even days processing, the execution of jobs happens at the same time. Administrators can postpone batch processes (e.g., payroll), while real-time processes must occur as soon as possible. Lab test results are often processed in batches, except where they support emergencies or major surgery, they are processed for efficiency rather than immediacy. PCR (polymerase chain reaction) tests were processed in batches so the delay could be 48hrs.
Covid-19 has shown the importance of speed of response. In 2 years, we have learned to do things more quickly and all of these have required capturing and processing data faster. We do not always need real time data, but we cannot always wait on batch processing and the importance of near real time data has increased significantly.
Time is your greatest asset – timely real-world data
So, when patients get precious time with a healthcare professional, they need the right data to be presented to the right person at the right time. They need a recent history that is as accurate as possible, presented in a way that can be used to clarify the client condition and empower the conversation between the healthcare professional and patient. A consequence of the pandemic is growing waiting lists and pressure on the time of healthcare professionals. Patients who have waited a long time may be even more anxious.
The need for virtual consultations and hybrid arrangements is unlikely to reduce. Digitally enabled triage is likely to become essential especially for long covid patients. In this case, self-report on the history of large numbers of symptoms is necessary. This is especially difficult as brain fog is common. Hence there is a greater need for near real time self-report, such as that provided by TIYGA, where possible augmented by sensor data and automated analytics.
Patients need to be more aware and confident in managing their health and to have better conversations with the teams that can help them. This must be driven by enlightened healthcare professionals and employers who are happy to encourage people to use apps and wearables and send the right data to the right person at the right time.
- Katrina Delargy is founder and CEO at TIYGA
