Subscribe Now

By entering these details you are signing up to receive our newsletter.

​May 2020

rare disease professionals and places Previous editions

Mapping the clinical and emotional
journey to better understand lived
experience in rare disease

Dr Sumira Riaz, head of health psychology at OPEN
Health (OH), is somewhat of a secret weapon, but to
understand why, it is important to understand how a
trained psychologist fits within an organisation such
as OPEN Health, a family of expert practices working
to drive change in healthcare communications and
patient access, and a little about the woman herself.
As a registered psychologist with experience in
cognitive behaviour therapy, Sumira has a strong
clinical background having worked for the NHS for a
number of years. In addition, Sumira has gifted her
skills by supporting adults through an affordable
therapy charity. Sumira explains, ?For many adults,
cost is a significant barrier to accessing vital therapy
and it’s important there are services to support
affordable therapy.?
Looking for ways to more broadly utilise her skills,
Sumira started working at OPEN four days a week. It is
important for Sumira that she maintains her clinical
connection and so she continues to work one day a
week within the NHS, where she offers psychological
support to adult patients living with chronic pain.
When Sumira first joined OH two and a half years ago,
she became an integral part of the patient
engagement team and worked on developing
strategies to change behaviour toward clinical trials
for patients, carergivers, and healthcare professionals
(HCPs), and the development of patient engagement
Such is the value in having this clinical understanding
and insight in this area that Sumira now heads up a
rapidly growing team as head of psychology in a
dedicated department within the patient engagement
practice, with plenty of scope for future expansion. ?In
addition to our core team we also actively encourage
trained professionals and undergraduates to engage
in work placements within OH. Having an
understanding of both the clinical and process driven
sides of the healthcare odyssey is both personally and
professionally enriching and so we look to offer that
opportunity to others through regular work
A primary workstream for the health psychology
team? and the area that they excel in? is becoming
industry innovators in the creation of the patient
journey and experience map.


Rare diseases are characterised by a wide range of
symptoms that vary from disease to disease, as well
as person to person. What is clear is that one person?s
experience of a disease will almost certainly not be
the same as another?s. Consequently, there is no
single nor consistent experience to draw from and
these ill-defined and complex pathways make
innovation in the space a challenge.
At any time, there can be multiple HCPs involved, as
well as many varied clinical interventions required at
Patient journeymapping


RARE Revolution
different stages: all of which has an emotional impact
on the person diagnosed as well as family, friends and
For Sumira, the opportunity lies in looking within the
lived experience to achieve actionable insights which
can help in drug discovery and innovation. Previously,
patient mapping was looked at as a very linear
transactional process with little or no regard for the
emotional or psychological impact of the disease.
The value of developing a patient journey map cannot
be underestimated in adding clarity for both those
providing care as well as those requiring care but it is
clear that what is needed to add true value is a more
four-dimensional way of looking at these lived
By using a variety of methods, the health psychology
team bring these journeys to life giving a fully
annotated and well-rounded view of individual patient
experiences and the nuances between each patient.
They do this in a number of ways to suit the individual
and the needs and requirements of the study, which

  1. one-to-onein-personpatient interviews
  2. telephoneinterviews
  3. ethnographicresearch
    Pharma want and need to better understand this lived
    experience to develop the innovation necessary, and
    so Sumira and her team are now driving a movement
    to see mapping used earlier in the drug development
    process. By capturing this data before clinical trials
    commence there is a real opportunity to support the
    development of an evidence base that truly
    demonstrates the patient and societal benefit of
    emerging innovation.
    By being laser-focused into a specific disease area and
    working with existing contacts while forging new
    relationships with patient groups, treatment centres
    and individuals, diversity of experience can be

This data is then anonymised and used to build a fully
interactive patient journey map; utilising technology
developed in-house, this data sits within a convenient
app with videos and data embedded. In addition to
being shared back with pharma clients, this resource
is also a highly valuable resource which can be shared
on to partnering support groups and individuals.
Mapping patients along the entirety of a pathway,
from initial referral through further diagnostics to first
definitive treatment, enables an understanding of the
efficiency of care delivery and where opportunities
exist for improvement, or, in the case of rare disease
management, any points that require further clarity or
additional interventions.
A recent study led by OPEN Health highlighted that on
average the patient community waited seven years for
a diagnosis, caught in a physician?home?physician
bounce cycle. On better understanding the factors
that resulted in this delay, the client was able to
identify a training need and to create policy to address
this. This has led to a structured programme for
physician training with the express aim of driving
down the diagnosis time frame in this disease. ?An
opportunity to revisit this in five or so years to
understand the impact of this education and policy
would be wonderful and would highlight the value in
such journey mapping to all stakeholders.?

Rare Revolution (

Rare Revolution (

Skip to content