THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED
CARE IN HEALTH SYSTEMS54 Peter West et al. “Information Quality
Challenges of Patient-Generated Data in
Clinical Practice,” Frontiers in Public Health,
2017; Peter West et al. “Common Barriers
to the Use of Patient-Generated Data
Across Clinical Settings,” Proceedings of the
2018 CHI Conference on Human Factors in
Computing Systems, Paper No. 484, 2018;
AM Lai et al, “Present and Future Trends in
Consumer Health Informatics and Patient-
Generated Health Data,” IMIA Yearbook
of Medical Informatics, 2017; US Office
of the National Coordinator for Health
Information Technology, Conceptualizing
a Data Infrastructure for the Capture,
Use, and Sharing of Patient-Generated
Health Data in Care Delivery and Research
through 2024, 2018.
55 “Linking patient health data is a huge
opportunity for the UK,” EIU Perspectives,
June 29th 2018.
56 Conceptualizing a Data Infrastructure for
the Capture, Use, and Sharing of Patient-
Generated Health Data in Care Delivery
and Research through 2024, 2018.the integration of PGHD into health records brings issues of ownership, privacy and even legal liability,
if too much or too little reliance is placed on the information.^54
Nevertheless, some clinicians are starting to tap into PGHD. At Dr Morrow ’s practice, “we welcome
access to validated patient-generated, patient-owned data”, especially as at-home monitoring by
modern electronic devices can be more accurate than one-off clinical tests.
Nevertheless, he explains that substantial judgement and discernment remain necessary when using
PGHD. A major problem is that those producing these home tools ranges from “highly reputable
providers to charlatans and quacks”. The latter often provide information based on inherent claims
that do not stand up to medical scrutiny. In such cases, “if patients bring this into a medical context,
there is a clash of cultures between that and evidence-based medicine. That is where patient trust in
the physician is important: to what extent do you challenge their beliefs, or is seeming to accept the
data a tacit acquiescence, in which case one becomes complicit?”
For example, Dr Morrow contrasts how he strongly supported a patient who purchased a personalised
genomic profile of a tumour as a way to see which drugs were likely to work against it. On the other
hand, he would find “far less helpful” a patient who might come in with a hair analysis allegedly saying
he had a shortage of trace elements in his body. Unfortunately, both patients may be just as likely to
think they are bringing relevant and important data to the discussion. In practice, then, PGHD not
only enhances patient-centred care by providing more opportunities for informed patient-clinician
dialogue, it can make such discussions all the more necessary.
The substantial potential benefits, though, make engaging with PGHD worth the effort of overcoming
the inherent challenges. Indeed, notes Ms Perfetto, “we might be moving to a day where the clinician
will not have much choice. We will likely reach a point where data capture is automatic.” The English
NHS is trying to get ahead of the curve, encouraging the private sector to develop apps through
which patients with chronic conditions can produce data that will eventually integrate seamlessly into
electronic health records.^55
For now, however, health systems face problems that are all too common in the search for patient-
centred care. A recent study from the US Office of the National Co-ordinator for Health Information
Technology notes that: “Many health care systems, clinical practices of varying sizes and research
institutions lack the technical infrastructure, functional workflows, workforce capacity and training to
support PGHD intake.” Not only do they struggle to derive insight from the data available “they worry
that receiving PGHD from patients may add to their workloads and disrupt their workflows.”^56 As with
so much in patient-centred healthcare, taking advantage of PGHD will require a wider rethink of how
health systems work and reward activity.