Understanding patients’ and health
professionals’ perspective to build
confidence and trust
Senior Programme Officer, European Patients’ Forum
Artic Light eHealth Conference 2012, Lulea 20 June 2012
The European Patients’ Forum in the Health and
eHealth arena
Exploring user perspective:
the case of Telehealth
User-centred eHealth: how much progress did we
The link between patient empowerment and
The way forward: a user perspective
The European Patients’ Forum
• Independent, non-governmental umbrella organisation set up
in 2003
VISION: High-quality, patient-centred, equitable healthcare
for all patients in the EU
MISSION: To provide a strong and united patients’ voice –>
Putting patients at the centre of EU health policy
54 member organisations:
• 13 National coalitions
• 41 EU-level disease-specific umbrella patient organisations
150 million patients with chronic conditions across the EU
eHealth: 10 years back in time
It was more about the “e” than “Health” (ICT driven)
eHealth (the “new thing”) vs. conventional healthcare
(“the old thing”)
“Technology driven” as opposed to “demand driven”
Patients side-lined as stakeholders
Too many expectations of eHealth
Narrow-looking assessment methodologies and tools
User acceptance was largely neglected
EPF in the eHealth environment
EPF’s priorities in eHealth
• exploring patient acceptance
• patient - professionals relationship with a focus on confidence and trust
• investigating impact of eHealth on patient empowerment
• establishing networks at EU-level with other key stakeholders to put
patient at the center
Projects / Joint Actions
• Cooperating with other stakeholders
eHealth Stakeholder Group - High level Task Force on eHealth
• Transparent dialogue with eHealth industry
the Chain of Trust Project
Why Chain of TRUST?
• Poor awareness, and acceptance among patients and health professionals
are barriers to telehealth adoption
• Yet we still lack a thorough understanding of user perspective in telehealth
• To improve available knowledge of the specific views – needs, perceptions on
the added value and concerns of telehealth users
• To increase awareness and understanding at all levels
Understanding user perspective: the case of
How did we collect users’ views?
Literature review (I Quarter 2011) baseline information: 168
scientific articles reviewed.
Online survey (II-III Quarter 2011) : 6500 responses received.
6 National Workshops (IV Quarter 2011) with all target groups –
qualitative information: (GR, LV, NL, NO, PL, PT).
4 Focus groups (I Quarter 2012) at European level with the four
main target groups to validate findings and develop policy
recommendations accordingly.
Understanding user perspective: the case of
Both patients and health professionals believe that telehealth
carries the potential for:
• Improving quality of healthcare through more personalised,
continuous, efficient and responsive services.
• Improving access to healthcare for patients living in underserved
areas, and to a lesser extent, for socio-economically disadvantaged
• Fostering patient adherence because of the higher involvement of
patients in the disease management process and hence more
awareness of the importance to adhere.
• Helping patients and health professionals stay more regularly in
touch, which is a fundamental condition for maintaining trust.
Understanding user perspective: the case of
• Patients also believe that the use of telehealth:
 can improve knowledge of their condition
 lead to economic benefits for them
 provided it yields other benefits, they would be willing to pay more for
healthcare services as long as an individual can afford it
 can be instrumental in improving their health status and quality of life
 their family and relatives will be less worried about their health condition
thanks to the more regular monitoring
• Health professionals also believe that the use of telehealth
 Facilitate better cooperation with other health professionals
 Increase the time they can spend with patients and promote continuity of
Understanding user perspective: the case of
Some figures from our survey:
 92% of patients are willing to play a more
active role in managing their own condition
 60% of patients would be willing to use
telehealth in the short-medium future
 …but only 48% thinks they are ready to
handle the additional responsibilities
presented by telehealth
Understanding user perspective: the case of
 70% health professionals would be willing to
use telehealth in the short-medium future
 …but only 20% said that management
promotes the use of telehealth
 …and only 29% believe that their patients
will be in the position to use telehealth
service safely
Understanding user perspective: the case of
RISKS: Non users of telehealth have some major concerns:
• Risk to loose face-to-face contacts (telemedicine fully replacing
“conventional healthcare”)
• Impact of telehealth on:
 Patient safety
 Patient-health professional communication
• Long-term costs of telemedicine: costs shifted to patients
HEALTH PROFESSIONALS see more barriers for successful telehealth
implementation than patients:
 Many continue to see only changes in the way they deliver care
 Lack of clarity of legal framework: can they provide telehealth?
Understanding user perspective: the case of
• Telehealth communication does properly reach out users
 Poor understanding and awareness of telehealth services
• When it does the message is sometimes not understood
 Some perceived risks are due to misunderstanding/miscommunication of
• Familiarly with technology, privacy and confidentiality
concerns may not necessarily be the real barriers to adoption
• What really matters is:
 The way eHealth affects patient-health professional relationship
 The way it delivers benefits vis-à-vis conventional (only) care
 The way it responds to real needs as formulated by users
User-centred eHealth: how much progress
have we made?
• It was more about the “e” than “Health”
 Better focus on service-side vis-à-vis technology by repositioning eHealth
within HEALTH
 Acknowledgment that healthcare is different from other ICT-intensive
 Interoperability and other ICT aspects are still overshadow organisation
culture and/or user needs
eHealth vs. conventional healthcare
 Focus has shifted to integrated dimension
 eHealth does not replace but complement and bring added value to
traditional health services
 We do not communicate these messages correctly to intended
User-centred eHealth: how much progress
have we made?
• Technology driven as opposed to demand driven
 Increased recognition of the need to involve patients and health
professionals in eHealth
 Gaining importance of user-centred design especially in telemedicine and
patient-accessible EHR
 Still too often patients are involved too late when the application/service
is already developed
 Still some tendency to “convince” patients of eHealth rather than
“engage” with them
 Patient involvement still a “cost”, burden
User-centred eHealth: how much progress
have we made?
• Patients side-lined as stakeholders
Significant steps towards putting patients at the centre of eHealth
Paternalistic approach towards patients still remains
Patient organisations still poorly involved
We have not enabled the paradigm shift: patients from passive receivers
to active users
Too many expectations of eHealth
 More realistic vis-à-vis what eHealth can deliver eHealth alone will not
solve our challenges
 still need to better manage expectations
User-centred eHealth: how much progress
have we made?
• Narrow-looking assessment methodologies and tools
HTA processes have developed considerably over the last 10 years
Sound multidisciplinary methodology for telemedicine in place (MAST)
Increasing evidence of benefits
Limited transferability/replication (is evidence of large scale pilots
sufficient to foster investments in other regions?)
 Needs to improve tools to gather user perspective and empowerment
• User acceptance was largely neglected
User acceptance: a critical factors behind uptake and deployment
Assessment of user perspective is increasingly carried out
Still not clear how to strengthen acceptance in practice
Need to include user acceptance into sustainability plan (Pilots vs. large
deployment and the issues of facing reality)
 Needs to better explore the link between eHealth and patient
Exploring Patient Empowerment
• One of the expected outcomes of eHealth
• Does eHealth requires patient empowerment or does eHealth
leads to patient empowerment?
Patient empowerment
Health literacy
Patient control
Link between patient
and his/her
understanding of
health information
Relationship between
the patient and the
management of
his/her condition
Relationship between
patient and health
Meaningful Patient involvement in health
Exploring Patient Empowerment
1. Health literacy
to understand specific health information better
to understand their disease/condition and its implications better
to distinguish between quality health information from information pollution
to understand how changes in lifestyle could impact on patient health
2. Patient control
to monitor their treatment progress
to feel less anxious about the health condition
to feel more responsible for the management of their disease
to be more aware and understand test results and the relevance of the tests done
3. Patient participation
to better prepare for consultations with health professionals and meaningful
engage in discussions with HCP
to participate in defining treatment plans in partnership with HCP (concordance)
to be able to attract HCP attention to issues considered important by the patient
The way forward: a user perspective
• First of all never take user acceptance for granted: putting
acceptance at the heart of eHealth at all levels
• Provide incentives to promote user-centred design and
development at (macro, meso, micro level)
• We need to manage expectations: let’s speak the truth: eHealth
is not a panacea for everything
• We need eHealth ambassadors and more enlightened
The way forward: a user perspective
• Health literacy programmes for patients and training for health
professionals to go hand in hand with eHealth implementation
• Presenting eHealth as part of healthcare innovation processes
and link it to new financing models and change management
• Promote personalised eHealth vs. “one-fits-all” solutions
• Bring patients, health professionals and managers together: do
not involve them separately
To conclude with one last thought……
• Involving patients in eHealth require resources,
• The costs of not involving patients can be much
higher than the cost of not involving them
• Think of patient involvement as an investment
and not as a cost !!
and a few questions…
• How can we capitalise on increasing knowledge of user
perspective and acceptance to make better decisions?
• How can we better communicate eHealth to users?
• How can we communicate benefits to health professionals
so as to avoid they only see changes in care delivery
• What kind of incentives can be provided at national and
regional level to promote user-centered eHealth?
• How can we turn perceived risks into opportunities?
• How can we strengthen the link between eHealth and
patient empowerment?
Thank you for your attention!
[email protected]