The document discusses the potential for a telemedicine pilot program to serve patients with rare diseases. It summarizes surveys that found over 50% of patients would be receptive to telemedicine and over 90% are willing to learn video call applications. The document estimates a 3-year pilot program could save £6.8 million in healthcare costs while costing approximately £975,000 to implement. Key operational requirements for the pilot include videoconferencing capabilities and secure data protection.

1. Is there a need for a Rare Disease Nurse
Network for patients with rare diseases?

2. The Team
Natalie
Rebeyev
Engagement
Manager
Chun Hui
Lien
Senior
Consultant
Cason Chan
Consultant
Vidit Doshi
Consultant
Hanyuying
(Sherry)
Wang
Consultant
Saakshi
Chadha
Consultant
2

3. 1 Demand for a telemedicine pilot program
Operational requirements of a telemedicine pilot
Cost of a potential telemedicine pilot program3
4 Rare Disease Nurse Network
1
Content
2
3

4. Executive Summary
● There is strong demand for a telemedicine pilot program from rare
disease patients. Our survey findings indicates that a majority of patients
are receptive to a telemedicine pilot -- over 50% believe telemedicine will
help them save money and time, while improving quality of care received.
Over 90% of patients are willing to learn how to use video call applications.
● We identified four potential telemedicine models and key operational
requirements. We recommend having Case Managers to act as a single
point of contact for patients. Necessary infrastructure for the pilot should
include (i) video conferencing capabilities and (ii) secure data protection.
● A 3-year telemedicine pilot program is estimated to bring at least
£6.8M in healthcare cost savings while the project itself will cost
approx. £975k. There is further scope for cost containment through
outsourcing or using cloud storage.
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5. The project is structured into four phases,
each containing separate work streams
5
Phase 1
Background research
Phase 2
Establishing
feasibility of
telemedicine pilot
Phase 3
In-depth cost
analysis
Phase 4
Preparing for
consortium bid
• Examine already
established
international
pilots
• Interview KOLs to
understand the
benefits of, and
need for,
telemedicine
• Establish demand
for telemedicine
pilot by creating
and conducting
surveys
• Talk to leaders of
existing services
• Obtain hospital
administration
feedback on how
telemedicine might
affect care
• Develop
infrastructural
model
• Perform in-depth
cost analysis
based on current
models
• Leverage insights
from Phases 1/2 to
develop a cost
model
• Categorise
different funding
sources
• Seek partners
within the CRDN
network
• Ensure participants
develop impact of
pilot together
• Develop an
implementation
plan for launching
pilot study and
scaling up
(UK-wide)

6. Collectively, rare diseases are not ‘rare’, both
nationally in the UK and regionally in Cambridge
Source: Previous CCN analysis
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Nationally, there are ~3 million
patients with rare diseases
• A rare disease is a life-threatening or
chronic disease that affects less than
5 people in 10,000
• 1 in 17 people will suffer from a rare
disease
• UK population in 2016 was
~65 million
• In Cambridgeshire, the population is
~800,000
At least 3,000 patients reside in
Cambridge

7. Rare disease patients are confronted with a range
of challenges
7
Source: RareReality 2016
http://www.raredisease.org.uk/our-work/the-rare-reality-an-insight-into-the-patient-and-family-experience-of-rare-disease-2016/

8. Telemedicine would impact multiple stakeholders
Patients Hospitals
Families
Healthcare
professionals
Telemedicine affects every facet of the
healthcare system
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9. Telemedicine has the potential to generate tangible
benefits for the entire healthcare system
Source: Widespread deployment of telemedicine services in Europe
ec.europa.eu/information_society/newsroom/cf/dae/document.cfm?doc_id=5167
● Provide access to
scarce expertise
● Reduce delays in
correct diagnosis
● Reduce travel costs
and save time
Telemedicine has the power to improve the patient experience significantly
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Patients Doctors Hospitals
● Provide access to
scarce expertise
● Reduce delays in
correct diagnosis
● Reduce travel costs and
save time
● Reduce absenteeism
and late appointments
● Upskill doctors in
patient’s local area
● Provide holistic patient
care by interacting with
other specialists
● Generate cost savings
● Access to patients to
conduct clinical research

10. Successful telemedicine pilots in paediatric care in
Queensland, Australia provide award-winning care
The Centre for Online Health has pioneered a
unique way to deal with Queensland’s rural
population
90% of referrals lead
to consultations via
video conference
Over 15,000
consultations have
been conducted
since 2000
37 different
subspecialties of
paediatric care are
offered
Significant savings
for the healthcare
provider and
patients were
generated
Source: University of Queensland. https://www.uq.edu.au/news/article/2011/09/award-winning-telemedicine-trial-sick-infants
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11. Scotland has adopted telemedicine programmes
more quickly than other countries
Source: Scottish Centre for Telehealth and Telecare 2016 Report https://sctt.org.uk/sctt-end-year-report/
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Scottish Centre of
Telehealth & Telecare
Partners
Mastermind is a
computerised cognitive
behaviour therapy for
patients suffering from
mental health problems
United4Health is a
telemonitoring service for
patients with Diabetes,
COPD and Congestive Heart
Failure
SmartCare is in development
to deliver better
coordination and integrated
care with 7 health and care
partnerships
Living It Up is an online
supported,
self-management service for
people with long term health
and care conditions

12. Survey establishes patient’s demand for a
telemedicine pilot programme
Aims of survey
Determine rare disease
patient preferences and
support for telemedicine
vs
in-person visits
Determine if patients
can easily access a
telemedicine platform to
participate in pilot
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• Main groups of patients targeted are seen at Addenbrooke’s Lysosomal Disorder Unit (250
patients), Addenbrooke's Severe Insulin Resistance Clinic (150 patients) and Birmingham
Children’s Hospital
(280 patients)
• Disseminated to patients via CRDN and other platforms
Patients
targeted
• Examine the proportion of patients choosing different answers across each questions using pie
charts and bar graphs
• Compare the different segments of patients, based on age of patient and the clinic the patient is
seen at
Methods of
analysis

13. Percentage of respondents who are willing to
participate in a telemedicine pilot
● Number of respondents: 67
● 60% willing to participate in telemedicine trial (pilot)
13

14. 14
Survey respondents believe that telemedicine will
help them in a variety of ways

15. Survey respondents portray a positive attitude towards usage of
high-tech devices
15

16. Necessary components of the pilot pose potential
challenges for setup
Essential
factors for the
pilot
Operational requirements
Legal requirements
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17. Proposal:
Regional
Case
Managers
One-stop
shop
service
Single point of
contact for advice,
care and support
PILOT
Centre:
NoRo Centre,
Romania
Target
population:
Patients with
rare diseases
Cases per
manager:
30 (simultaneous)
Time frame:
18 months
(Jan 17–Jun 18)
EURORDIS: European Organisation for Rare Diseases
Source: Interview with Raquel Castro
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EURORDIS’s InnovCare Project provided insight into
designing a pilot study in Romania

18. Source: Interview with Raquel Castro
18
The InnovCare project focuses on the role of case managers
as a single point of contact for all patient needs
• Single and stable point of contact: hub of information and knowledge
• Listen, inform, support and empower patients and families, as well as
professionals involved in
care provision
• Facilitating coordination between services and networks of service providers
• Assessment/monitoring of needs, and observing those needs
Role of case
managers
• Centre has existing provisions: physical therapy, speech therapy, training for staff,
information and guidance services, etc.
• Romanian healthcare system has a centralised software for patient files
and data
Existing
infrastructure

19. Challenges
Administrative
Case Managers considered
“threatening” and
interfering by care
providers -
Important to introduce in
an appropriate way
19
Challenges faced while setting up the Romanian pilot were
centred on obtaining robust technology
Technological
Limited/compromised access
to internet, and insufficient
connection for
teleconferences
Need at least one person to
fix these problems

20. OrangeHealth – setting up telemedicine projects in France (three regions)
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Source: Interview with Andrew Green (OrangeHealth)
Telemedicine pilot set up in France suggests companies for
workflow software and teleconferencing software
Infrastructure
● Workflow management
● Cloud-based patient file management
● Access to patient data
● Imaging systems
● Equipment: camera, screens, network connections
Acceois provided the software for telemedicine workflow management
Equatel provided robust teleconference terminals – links with monitoring equipment

21. Operational requirements will require expansion of
current infrastructure
Operational
requirements for
telemedicine pilot
Working infrastructure:
working computers/tablets
with cameras
Seminar rooms/space for calls
Internet connection
Robust and secure: patient
and specialist
e-Health records
Constant access to the
patients files
Reliable teleconference
software
complies with privacy
regulations around
access to records
Source: CCN interviews with key opinion leaders and Scotland pilot program
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22. Legal infrastructure for Romanian pilot was governed
by national regulations
Data protection
and legal
infrastructure
The NoRo centre has social service and healthcare
provider status
Source: Interview with Raquel Castro
Patient files are under the control of the patient:
patient decides, patient shares
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23. Telemedicine pilot set up in France by OrangeHealth
focused on the efforts made to comply with data privacy
Source: Interview with Andrew Green (OrangeHealth)
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Data protection
● OrangeHealth provided virtual private network (VPN)
● OrangeCloud hosted data
Took 2 years to get approval
Issues:
● Full-time doctor availability
● Data duplication/back-up
● Data vulnerability
● Intrusion by external forces
Both comply with
France’s regulations

24. Both hospitals being considered for the pilot have
governance teams for ensuring data protection
Birmingham Children’s Hospital
Own Information Governance team,
that complies with national data
privacy regulations
Addenbrooke’s Hospital
Own Information Governance team,
ensuring that patient information is
dealt with legally and securely to
appropriate ethical and quality
standards (10 standards and
requirements, including Health Records
Management, Confidentiality and the
Data Protection Act 1998)
24

25. Impact of data protection and operational requirements
on plans for telemedicine arrangements
DATA PROTECTION
Informed consent of pilot
participants is important
● Main concern during group
calls with consultant
● Patients may be uncomfortable
with exposure to private data
OPERATIONAL REQUIREMENTS
Direct impact on all
arrangements
● Equipment with camera
is crucial
● E-health records must be
available to the doctor in order
to make best medical decisions
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26. Telemedicine
arrangement formats
(via video calls)
Patient to specialist
nurse/physician
from patient’s home
Small groups of patients
to specialist doctor
Patient at local GP to
specialist nurse/physician
Patient to specialist
nurse/physician + remote
monitoring of
physiological parameters
Proposed telemedicine arrangements have been
narrowed down to four potential formats
Source: CCN interviews with key opinion leaders
26

27. Patient at local GP to specialist nurse/physician model
may not get the GP buy-in necessary for success
Source: Interview with Helena Baker (Medical Research Network)
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1. GP workload prohibits taking on additional responsibility
“The key issue with that model is you don’t get GP buy-in. The GPs are under such huge
pressure, and when a patient has a rare disease, GPs very much want the consultants
to come in and deal with that.”
2. Lack of education buy-in among GPs
“There is a small cohort of GPs interested in continuing education and doing exciting
new novel things like that – the vast majority won’t. But only 5% of GPs take part in
clinical trials anyway.”
3. Logistical difficulty in lining up schedules
Both GPs and consultants already sometimes face issues with scheduling, as clinics they
have with patients sometimes start late. This will pose a significant challenge should
both parties be involved in a given consultation.

28. A 3-year telemedicine pilot programme in Cambridgeshire is
likely to save £34 million by improving healthcare outcomes
Source: WDS Headline Findings & The King’s Fund Publications.
https://www.kingsfund.org.uk/publications/articles/kent-telehealth-pilot-study
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Case study in Kent
• As indicated in the
pilot study, telemedicine
could reduce clinician
home visits, unplanned
admissions and
A&E visits
• The 6-month pilot study
has led to an average
saving of £1,878 per
patient
Extrapolating to Cambridgeshire
• A 3-year pilot programme in
Cambridgeshire is therefore likely to
save £1,878 x 6 = £11,268 per patient
• Assuming 3,000 patients with rare
diseases live in Cambridgeshire, the
aggregate saving would be £34 million,
plus improved health care outcomes
• These figures further highlight
the effectiveness of telemedicine
in cost-savings

29. Cost difference for each telemedicine meeting vs. in-person visit
• Assume average travel costs around Cambridgeshire is £20
for a round trip
• Assume each visit consumes 1 hour on the road and costs
£44 for nurse hourly wage (not directly patient-related work)
Compared to in-person visits by nurses, the use of a
telemedicine platform could further save £44 costs per meeting
Source: Unit Costs of Health and Social Care 2015; http://www.pssru.ac.uk/project-pages/unit-costs/2015/
Saving on
travel-related costs:
£64
Extra cost for
telemedicine platform:
£20
Each telemedicine meeting could save £64 - £20 = £44
• Market research indicates that telemedicine platforms (e.g. 1
Doc Way in the U.S.) cost c.£20/hour
• Assume each telemedicine meeting lasts at most 1 hour
29

30. 30
To construct a cost model for the pilot program, patient
segmentation is performed on Addenbrooke’s and BCH, followed
by fixed and variable cost projection
Variable
costs
Fixed
costs
Equipment
Overhead: Admin & IT staff
Training
Attributable nurse salary
Additional data storage
System maintenance and upgrade
Installation
Travel (reserve level)
Addenbrooke's Hospital (N=650)
● Lysosomal/Metabolic Disorder Unit (500)
● Severe Insulin Resistance Unit (150)
Birmingham Children’s Hospital (N=280)
● Autosomal Recessive Polycystic Kidney
Diseases (80)
● Cystic Fibrosis (100)
● Tumour Suppressor Complex (100)
Key assumptions
● UK internet access rate: 92%
● Initial adoption rate: 70%
● Annual dropout rate: 5%
● Additional buffer time for system handling: 15%
● Patient terminal: £405
● Hospital terminal: £6,098
Source: World Bank, Frost & Sullivan, Unit Costs of Health and Social Care 2013 & 2015; http://www.pssru.ac.uk/project-pages/unit-costs/2015/

31. Total cost of the 3-year pilot program is estimated at £975K, with
equipment costs and specialist nurse salaries being major cost drivers,
contributing to 31% and 28% of total cost, respectively
% of
total
31% 3% 4% 21% 28% 5% 5% 3% 100%
• Given the high requirement of upfront infrastructure investment, fixed costs account for 59% of total costs
• This further supports the idea of leveraging existing hardware resources, or procuring less customized
telemedicine solutions as long as the healthcare effectiveness is not compromised
31

32. Splitting costs along a timeline, initial setup costs take up 36% of
total costs, with the remaining costs evenly distributed throughout the
3-year pilot program period
• 61% of fixed costs will be incurred in the initial setup phase
• This indicates the possibility to achieve greater economies of scale (i.e. lower costs on a per
meeting basis) when the pilot program is extended to a longer period
• CRDN may opt for applying to additional grants or forming partnerships to finance a longer
program
32

33. For cost containment, besides equipment procurement, overhead and data
storage costs could further be reduced if IT and admin staff are outsourced
and cloud storage is used
Cost model summary for the 3-year telemedicine pilot program:
Source (model assumptions): World Bank, Office for National Statistics, Orange Health, Cambridge Consultants, Unit Costs of Health and Social Care
2013 & 2015; http://www.pssru.ac.uk/project-pages/unit-costs/2015/
33

34. Potential benefits of the pilot program is projected to be £6.8M
The telemedicine pilot program is estimated to bring 6.0x return on
investments and thus represents strong financial saving potential
• Extrapolating the cost-saving experience from Kent, a 3-year pilot study could lead to
an average financial saving of £11,268 per patient
• In the cost model, there would be 604 patients on average using the telemedicine
platform throughout the program horizon
• Therefore, the estimated benefits could amount to £11,268 X 604 =£6.80M
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Estimated ROI = (£6.80M - £0.98M)/£0.98M = 6.0x

35. Cost difference for each telemedicine meeting vs. in-person visit
• Assume average travel costs around Cambridgeshire is £20
for a round trip
• Assume each visit consumes 1 hour on the road and costs
£44 for nurse hourly wage (not directly patient-related work)
Compared to in-person visits by nurses, the use of a
telemedicine platform could further save £44 costs per meeting
Source: Unit Costs of Health and Social Care 2015; http://www.pssru.ac.uk/project-pages/unit-costs/2015/
Saving on
travel-related costs:
£64
Extra cost for
telemedicine platform:
£20
Each telemedicine meeting could save £64 - £20 = £44
• Market research indicates that telemedicine platforms (e.g. 1
Doc Way in the U.S.) cost c.£20/hour
• Assume each telemedicine meeting lasts at most 1 hour
35

36. Executive Summary
● There is strong demand for a telemedicine pilot program from rare
disease patients. Our survey findings indicates that a majority of patients
are receptive to a telemedicine pilot -- over 50% believe telemedicine will
help them save money and time, while improving quality of care received.
Over 90% of patients are willing to learn how to use video call applications.
● We identified four potential telemedicine models and key operational
requirements. We recommend having Case Managers to act as a single
point of contact for patients. Necessary infrastructure for the pilot should
include (i) video conferencing capabilities and (ii) secure data protection.
● A 3-year telemedicine pilot program is estimated to bring at least
£6.8M in healthcare cost savings while the project itself will cost
approx. £975k. There is further scope for cost containment through
outsourcing or using cloud storage.
36

37. ‘This work has been undertaken as part of a student educational project and the material should be
viewed in this context. The work does not constitute professional advice and no warranties are made
regarding the information presented. Cambridge Consulting Network do not accept any liability for the
consequences of any action taken as a result of the work or any recommendations made or inferred’
Thank you
Natalie Rebeyev: nr406am.ac.uk
Saakshi Chadha: sc885@cam.ac.uk
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