10th Annual Sickle Cell and Thalassaemia Advanced
Conference, 5-7 October 2016, London
Emerging haemoglobinopathies services -
the role of digital technologies:
the German example
Stephan Lobitz
Charité – Universitätsmedizin Berlin
Klinik für Pädiatrie m.S. Onkologie/Hämatologie/SZT
Agenda
• Part 1: Effects of the refugee crisis on
haemoglobinopathies services in Germany
• Part 2: the potential of digital health interventions
• using the example of a smartphone application
Agenda
• Part 1: Effects of the refugee crisis on
haemoglobinopathies services in Germany
• Part 2: the potential of digital health interventions
• using the example of a smartphone application
Agenda
• Part 1: Effects of the refugee crisis on
haemoglobinopathies services in Germany
• Part 2: the potential of digital health interventions
• using the example of a smartphone application
Caution!
Smartphone Applications will not solve the refugee crisis!
The Refugee Crisis
Asylum seekers in Germany
Number of individuals seeking asylum in Germany1
1Source: Bundesamt für Migration und Flüchtlinge, www.bamf.de (August 2016)
Challenges
Origin of individuals seeking asylum in Germany1
1Source: Bundesamt für Migration und Flüchtlinge, www.bamf.de (August 2016)
The case of Mohammad
The case of Mohammad: medical aspects
• beta thalassaemia intermedia • homozygous beta(0) thalassaemia
• heterozygous alpha(0) thalassaemia
• total splenectomy in Syria to reduce transfusion
requirements
• stroke in March 2015 • persistent hemiparesis (right)
• dependent on wheel chair
The case of Mohammad: medical aspects
• auto- and alloantibodies (anti-E, anti-Jk(b), anti-s and warm antibodies)
• physical stigmata of beta thalassaemia
• severe iron overload and sequelae (no chelation)
• colonization with multidrug-resistant Klebsiella
pneumoniae • requires isolation in hospital
The case of Mohammad: social aspects
• fled from Aleppo in August 2015 via Mediterranean
Sea and Balkan route with his father
• left mother and two siblings
in Aleppo
• family unification was extremely
difficult
The case of Mohammad: social aspects
• family was cheated out of 10.000 US$ to get an
earlier appointment at German embassy in Beirut (current mean queue time: 14 months)
• family tried to go to Germany illegaly with father‘s
best friend‘s family
• whole family of best friend drowned (parents and 4 children)
The case of Mohammad: one year later
• all family members are together again (since 4 weeks)
• Mohammad has received a bone marrow
transplant four months ago and is doing well
• they found a nice flat a plan to stay in Germany
Unusual findings and challenges
• physical stigmata of thalassemia (due to insufficient
transfusion therapy)
• severe iron overload and sequelae (even in SCD)
• allo- and autoantibodies
• colonization with multidrug-resistant organisms
• social problems (including language and insurance)
• psychiatric problems (traumatic experiences)
Challenges
Distribution of refugee quarters2 Distribution of haemoglobinopathies
before refugee crisis1
More hospitals are involved in care for patients with haemoglobinopathies!
1Kohne et al. (2010) 2Google Maps (2016)
And what does all this have to do with
Digital Health Interventions (DHI)?
And what does all this have to do with
Digital Health Interventions (DHI)?
• Nothing!
• But it reveals and aggravates pre-existing problems.
• There is an acute need to work more efficiently.
• DHI have the potential to support that.
Digital health interventions
In focus: smartphone applications („apps“)
• currently very popular in health sector „There is an app for everything“
• 150-200.000 health apps in the stores
• 20.000 medical apps in the strict sense
• Sales volume: 27.000.000.000 USD
In focus: smartphone applications („apps“)
• Many chances, but also many risks and open
questions:
• rapid development of market
• legal regulations can‘t follow the technical innovations
• critical assessment of every app required
• very few studies and poor evidence
• usefulness and data security
Key problems in Germany
• Haemoglobinopathies are rare diseases
• Oncology and Haematology are no separate
disciplines
• HCP focus on oncology
• Funding is poor
Lack of care facilities (adults >> children)
Key problems in Germany
• Basic clinical care (transfusions, chelation,
hydroxycarbamide etc.) is provided
• No disease management programs
• lack of supportive care, in particular not enough
psychosocial support
• lack of disease education
• No powerful patient support group
Particular problems in adolescent haemoglobinopathies
care
• Patients
• are overprotected (by their mothers)
• are not interested in their disease
• don‘t adhere to therapy
• don‘t keep their appointments
• don‘t understand their disease
How can we „enthuse“ patients for their disease?
The (obvious) idea
Priorities for Health Care Providers
• to awaken patients‘ interest in their disease
• to connect patients (in a secure social network)
• to help the patients to understand their disease
• to support health promoting behaviour
• to help in emergency situations
• to get a detailed documentation of the clinical
course of an individual patient
The first semi-structured focus group interview
• Do you think an app could be helpful?
• If yes, which features does an app need?
The first semi-structured focus group interview
• Do you think an app could be helpful?
• If yes, which features does an app need?
What should an app be able to do?
A patient-centred iterative approach1
1Curtis et al., JMIR mHealth uHealth 2015;3(2):e69
What should an app be able to do?
A patient-centred iterative approach1
1Curtis et al., JMIR mHealth uHealth 2015;3(2):e69
What is the target behaviour in SCD and
thalassemia?
1Curtis et al., JMIR mHealth uHealth 2015;3(2):e69
• without a doubt: improved medication adherence
• everything else is of minor importance (in terms of the app development process)
The second focus group interview
• Questions on
– Knowledge and skills • What are the complications of your condition?
– Memory • Do you normally set a reminder to take your medication?
– Beliefs about capabilities • How confident do you feel about managing your condition?
– Intentions • Do you intend to take your medication every day? If not, why not?
The second focus group interview
• Questions on
– Beliefs about consequences • What do you believe may happen to your body if you take your
medication?
– Reinforcement • What would be an incentive to take your medication?
– Environmental context and resources • What are your thoughts on the things in your environment that make it
difficult to take your medication? (e.g. Lack of time, lack of privacy)
The second focus group interview
• Questions on
– Social Influences • What kind of support do you receive from your close friends?
– Emotion • Does taking your medication caus any emotional reactions and feelings?
(E.g. anxiety, stress, low mood)
Selected results (n=10)
• 8/10 view condition as very serious
• for 8/10 it is not an effort to take their medication
• all intend to take their medication every day
• Most important barriers
– forgetfulness
– being outside of the home environment
– dependence from their mothers
Resulting app features
• Avatar
– bonus points for interaction
(e.g. daily mood log)
– customize avatar with points
Resulting app features
• Reminders
– Medication
– Appointments
– Message from doctor • „Don‘t forget to bring your whole
family tomorrow for HLA typing!“
– Statistics of mood logs
and drug adherence
Daily tips & quizzes
• optional
• to spread important
information in an
unobstrusive
manner
Leader Board
• avatars and bonus
points of other patients
• only feature to connect
patients in
1st draft of app
Emergency information
• numbers and adresses
• Crucial information for
healthcare professionals
who are not familiar with
the condition
Coming back to the refugees
The Arabic version of the app might at least help that
the patients understand their treatment plan.
Not half bad…
Future prospects
• „Community“ feature to link patients within a secure
peer-to-peer social network (requires a minimum number of app users)
• Intergration of wearables to monitor daily activity
and interactive analysis of data („Why are you so inactive? Do you suffer a pain crisis?“)
• Real-time measurement of biochemical parameters
in blood?
• and many many more…
Take home messages for future app developers
• Don‘t do it alone!
• You need a multiprofessional team
– patients
– doctors
– a psychologist
– a graphic designer
– computer scientists with experience in health app
development
– some students
Acknowledgments
• Kai Sostmann
• Kristina Curtis
• Anastasiya Lebedev
• André Fiedler and his team from
Condat AG
• Annika Mierke and her team from
das stilbüro
• Regine Grosse
• Anna Hudalla
The patients from Berlin and Hamburg university hospitals
Thank you for your kind attention!
The Selfie Generation
For more information, please
visit our poster in
Linacre room
where you can also test the
current prototype!
Interested in a cooperation? [email protected]
