over a period of time - for example ’Distance reached
in 24h’. We favour an approach where any data point
created at the source system is mapped to a FHIR ob-
servation. In our approach, three distinct walking /
running episodes in a 24 hour window would be rep-
resented as three FHIR observations, not a single one.
3 ILLUSTRATIVE CASE STUDY
Lifestyle data can be used to improve the health and
well-being of people of all ages.
To discuss our proposal for managing lifestyle
data, we consider the case of arthritis, a group of
chronic conditions that affect the joints in the body.
As of 2017, 400,000 adults in the UK have rheuma-
toid arthritis, and prevalence increases with age. Fur-
ther, 8.75 million people in the UK have sought
treatment for osteoarthritis, where prevalence also in-
creases with age (Arthritis Research UK, 2017).
For the management of rheumatoid arthritis, the
National Institute for Health and Care Excellence
(NICE) in the UK recommends access to physiother-
apy services, to improve fitness and encourage reg-
ular exercise (Deighton et al., 2009). Similarly, for
the management of osteoarthritis NICE recommends
physical exercise for local muscle strengthening and
general aerobic fitness (Conaghan et al., 2008).
In term of assessing pain intensity - a key mea-
surement for arthritis management - there are differ-
ent scales available, with good degree of correlation
among them (Downie et al., 1978). Once could use a
descriptive scale (nil, mild, moderate, severe, very se-
vere), a numeric scale (0 - no pain, 10 - worst possible
pain) (Farrar et al., 2001) or a visual analogue scale
(100 mm in length anchored by the two extremes)
(Hawker et al., 2011).
Based on the clinical context, there is a demon-
strable need for data related to physical activity and
pain levels to be shared between users, GPs and phys-
iotherapists. The hypothetical customer journey we
use as a source of requirements is then: a patient di-
agnosed with arthritis has been referred by his GP to
a physiotherapist. The physiotherapist recommends a
regime of moderate physical activity, which includes
outside running sessions and pilates classes at a local
gym. The user would like to share a full record of his
physical activity with the physiotherapist, as well as
be able to track how his symptoms (i.e. pain levels)
change over time, as a result of his efforts. In turn,
the physiotherapist would like to share summary data
with the patients GP.
To support this journey, we need to enable three
types of information flows.
The first scenario we aim to support is a person
centric view: allowing one individual to aggregate
data about himself which is held by different plat-
forms and providers. For example, somebody manag-
ing osteoarthritis could attend physiotherapy sessions,
he could run in the park during the weekend and at-
tend a T’ai chi class in the gym once a week. He
should have access, combine and own all of this data
- information generated by a specialist, by a wearable,
by a fitness service provider, or self reported.
The second scenario we aim to support is an or-
ganisation centric view: allowing service providers to
receive data shared with them by their clients. For ex-
ample, a physiotherapist should be able to access data
about physical activity levels and self reported pain
levels from each individual under treatment. Equally,
a research institution may want to accumulate large
datasets of lifestyle data for clinical research, from
patients willing to share their data.
Third, we are looking to support organisations that
hold lifestyle data about their clients and want to of-
fer access to this data to the individuals themselves.
For example, a gym chain looking to share individual
attendance data with the gym members, so that they
can further share this data with a physiotherapist.
4 FHIR PROFILES FOR
LIFESTYLE DATA
Our first contribution is a demonstration of how the
FHIR standard may be used to describe lifestyle data
in a provider agnostic fashion. There are many poten-
tial data sources for lifestyle data:
• self-recorded observations
• observations captured by providers of a certain
service: health assessments, personal coach
• smartphones, wearables and body sensors
• smart home devices: smart meters, environment
sensors, smart speakers with voice-enabled digital
assistants
In order to capture this variety of data we needed
to identify a set of profiles capable of representing
it. Following FHIR best practices (Furore, 2017), we
chose to extend the Observation profile, prioritizing
removing fields irrelevant for our context of use, and
only introducing new fields when no existing fields
could possibly represent the data. The constructed ob-
servation profile is shown in Figure 1. This could be
used for example to create a recording of self reported
pain intensity, in reference to our arthritis case study.
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