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Patient Centric Healthcare - What's Stopping Us?

Jenny Royle1 and Rachel Jones2

1 MediPaCe Limited, London, UK

2 Cheshire, UK

1.1 The Evolution of Future Health Systems

The primary aim of healthcare systems around the globe is to improve the well-being of populations, with the World Health Organization defining health as "A state of complete physical, mental and social well-being and not merely the absence of disease or infirmity" (World Health Organisation, 2020). Healthcare is not merely treatments for diseases, it is instead a way to support people to achieve the highest attainable mental and physical and social well-being for themselves. But traditional healthcare systems are not set up in this way, and rather than focusing on integrating all the holistic elements required for promotion of health in an individual, they are orientated toward the treatment of disease and malaise after things have already deteriorated in a person's well-being.

The difference between absence of disease and total well-being is subtle but fundamental. Supporting well-being involves encouraging people to live a healthy lifestyle (both physically and mentally) and providing the tools, systems, and education for each person to aim for the best possible version of themselves often via self-care principles-whether or not they are sick at the current time.

Other factors that have further impacted the tension between the treatment versus a self-care model of health have emerged during the COVID-19 pandemic during 2020, which forced upon us innovations and technologies that were once confined to pilot status. These were mobilized during the 2020 pandemic out of necessity in order to meet the restriction in face-to-face services required to prevent transmission of the virus between people. Many of these rapid accelerations, particularly in relation to telehealth visits and remote monitoring, are here to stay because, once pushed to try a new approach, it has been found to be efficient and a positive experience for many (Jones et al., 2020; Norman et al., 2020; Wosik et al., 2020). An area that is a fundamental component of this wave of change is the process of microsampling at home.

For the uninitiated, microsampling involves the taking of small droplet amounts of body fluid-blood or saliva as examples-in the comfort of a person's home. The samples themselves are taken by the patient or with assistance from a caregiver and are then stored and packaged as directed (for example by drying on a specialized sample tip or card and sealing into the envelope provided). These are then either posted or collected and sent to a central laboratory for processing, thus negating the need for a patient to visit an outpatient clinic or local surgery (Bateman, 2020). The laboratory assay must be validated and provide sufficient accuracy to support accurate clinical decision-making. This onset of a remote, patient centric approach to sampling brings with it the chance to fundamentally challenge and change the healthcare delivery model. Sampling and appointments can be decentralized, and most routine supportive care can be virtual. This does not mean the end of the hospital or GP visit, but it does mean that the approach used can be fitted to the requirements of the individuals involved and the healthcare decisions that need to be made. Remote sampling and consultations are more time efficient (Ballester et al., 2018; Prasad et al., 2020; Russo et al., 2016) and this means that not only can they be scheduled around peoples' daily lives better but also any face-to-face appointments can be prioritized for people where in-person consultation is truly needed. For overstretched front-line staff and health systems, this is likely to be a very attractive proposition.

Research has also shown that dried blood spot sampling versus conventional blood sampling conferred cost savings across the ecosystem in renal transplant and hemato-oncology patients (Martial et al., 2016). In this study, switching to home sampling was associated with a societal cost reduction of 43% for hemato-oncology patients and 61% for nephrology patients per blood draw. From a healthcare perspective, costs reduced by 7% for hemato-oncology patients and by 21% for nephrology patients due to the replacement of office-based tests with home-based sampling.

So the evidence suggests that virtual care provides a mostly positive patient experience and is more efficient for the health service. Could this also help reduce the number of people not "turning up" for medical appointment (if the consultation comes to them)? Research has shown that the high levels of "no shows" to hospital appointments have a large impact on the organizational structure and cost to a health provider (Dantas et al., 2018; Jefferson et al., 2019; Mohammadi et al., 2018). Although no research has been carried out on this to date, it is possible that the efficient use of home sampling could reduce this "appointment missing," and this more optimized supportive care for patients could offer additional benefits on the downstream impacts to service. Another potential benefit of home sampling could be the time freed up for those more in need of face-to-face contact and better decisions on how to balance the two approaches. There are benefits and limitations to both home-based and in clinic approaches-for example, home care approaches which are decentralized have been shown to give better individualized, immediate care, but along with this, the responsibility for monitoring is largely delegated to technical devices, patients, and their families (Oudshoorn, 2009). Face-to-face appointments in the clinic have been shown to be preferred over telemedicine in specific circumstances such as when patients have low self-management ability and/or depending on the purpose of the consultation (e.g. initial discussions about terminal disease, which may have additional, unspoken support needs; Chudner et al., 2019; Derkson et al., 2020). Designing an integrated approach based on the person's needs may be most beneficial for all. For example, in 2019, Jiang and colleagues found that correctly timing a face-to-face consultation increased a patient's ability to accurately find information digitally and administer self-care post consultation. Integrated approaches also bring the potential to save more face-to-face consultation time for personalized conversations and supportive care, leaving more simple tests and interventions to be carried out at home.

The authors suggest the use of home blood sampling may have positive impacts on a person's overall well-being by allowing intrusive interventions to be carried out within a familiar home environment. A survey was taken of 39 adult kidney transplant patients who underwent both traditional venepuncture and microsampling approaches for monitoring of their condition and the current blood sampling burden was quantified using two measures: anxiety and travel requirements (Scuderi et al., 2020). A third of participants (n =?13) reported blood test anxiety and 44% (n =?17) spent more than an hour just to travel to the required phlebotomy site for standard of care. Preference between the two approaches was also explored: 85% (n =?33) preferred microsampling approaches and 95% (n =?37) expressed an interest in collecting their microsample themselves at home. This demonstrates a clear patient preference and willingness to give microsampling a go for monitoring post-transplantation recovery progress.

1.2 Exploring the Barriers to Home Sampling

Given the efficiencies and benefits of home-based care, why is not remote patient centric microsampling more rapidly adopted everywhere? The answers may rest with people and the hurdles involved in fundamentally changing established care pathways and healthcare cultures in which people are already working at maximum capacity to deliver what they know, let alone try something new.

The scientific and technological aspects of patient centric microsampling have accelerated in the past 5?years and are driving the field of healthcare in the home; this chapter aims to focus on many of the key concerns that have been heard through working in the clinic, with patients, and developing technologies. The aim is that by starting a discussion around each of these concerns and by proposing potential solutions, developers and leaders of the future will be able to co-create the approaches with the relevant end users and speed up the realization of benefits that these sampling processes can bring.

1.2.1 Barrier One-The Discord Between Innovation and Practice

Recent events of the pandemic in 2020 have shown us that all healthcare systems run at a finite capacity. To implement change, the very same people who rely on established approaches have to, instead, adopt and implement something brand new, while maintaining their high standard of care in challenging times.

The expertise behind the development of highly sensitive microsampling technology has, up until now, been mostly confined to pharmaceutical companies and private laboratories and was...