Francesco Florindi, ECPC Public Affairs Coordinator, (@francescoflo) slides from Panel 1: Cancer patients’ expectations of mHealth. ---- This was presented at the ​"Unleashing the mHealth potential for cancer patients" event held on Wednesday 25th May 2016 (16​:30-18:30pm) in the European Parliament. #mHealthCancer ​"​mHealth and eHealth are becoming realities in Europe: this is demonstrated by the growing size of mHealth apps’ market, by the raising investments in eHealth infrastructures and by the fast adoption, at various degrees, of mHealth applications by patients. The burden of cancer is also raising: more than 10 million EU citizens are affected by cancer, incidence and prevalence are growing, and the socio-economic impact of cancer heavily burdens both healthcare systems and cancer patients. The recent political agreement on the text the General Data Protection Regulation and the production of the Privacy Code of Conduct mHealth apps further stir the debate regarding the use of new mHealth technologies within cancer care pathways. Are cancer patients enjoying the benefits of mHealth? In which field can cancer patients profit the most from mHealth apps? Is the regulatory framework supporting the development of useful and safe mHealth apps for cancer patients? Are there other structural obstacles to the full integration of mHealth apps in the cancer patients’ journey?​"​ The event will be hosted by MEP Cristian-Silviu Busoi (EPP, Romania), one of ECPC closest champions within the European Parliament and a knowledgeable supporter of the development of eHealth/mHealth in Europe. The event w​as followed by a cocktail reception. Join the discussion on Twitter using​ ​#mHealthCancer​ The event is part of the initiatives for the 2016 European Week Against Cancer #EWAC2016​ Mor​e information can be found on the European Cancer Patient Coalition's website: http://www.ecpc.org/pressroom/events/icalrepeat.detail/2016/04/26/61/-/-

1. 1
What do cancer patients need from mHealth?
Brussels, 25th May 2016

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ECPC: "Nothing about us, without us"
• Representing 402 cancer patient groups in 44 countries
• All cancers – common and rare
• Run and governed by patients
• Promoting timely access to appropriate prevention, screening, early
diagnosis, treatment and care for all cancer patients
• Reducing disparity and inequity across the EU
• Encouraging the advance of cancer research & innovation
• Increasing cancer patients' influence over European health and research
policy

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European Cancer Patient Coalition’s Activities

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ECPC: cancer patients’ recognised voice
ECPC represents cancer patients within:
• European Commission
• Joint Action on Cancer Control – CanCon;
• Joint Action on Rare Cancer - JARC
• European Commission’s Expert Group on Cancer Control
• European Medicines Agency
• Patients’ and Consumers’ Working Party
• mHealth
• Member of the WG on mHealth apps assessment
guidelines
• Contributing to the Code of Conduct mHealth apps
privacy

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Structure
1. What is a cancer patient?
2. What cancer patients need from mHealth?
1. Patients’ expectations
2. Usability – Patients’ literacy
3. Large and small developers
4. Interoperability & implementation
5. Building trust - Data protection
3. ECPC’s recommendations

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Are cancer patients just individuals in poor health?
NO
There are 16 million Europeans
living with a cancer diagnosis
Cancer costs Europe 126 billion EUR/year
60% weights on patients shoulders
(lost DALYs, loss income etc...)
Cancer patients are citizens, therefore:
• Consume = impact on the market
• Pay taxes = influence on payers
• Vote = influence on politics
• Advocate = influence on policies

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Structure
1. What is a cancer patient?
2. What cancer patients need from mHealth?
1. Patients’ expectations
2. Usability – Patients’ literacy
3. Large and small developers
4. Interoperability & implementation
5. Building trust - Data protection
3. ECPC’s recommendations

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What cancer patients expect from mHealth?
Better cancer patient experience
• Better outcome
• Patients mobility
• Better quality of life
• Home care / Self care
• Better information
• Doctor/patient
• Patient/legislator
• Access to patient records!
• Better survivorship
• Transition from intensive care to healthcare follow-up
• Rehabilitation services
• Return to work

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How mHealth is used in cancer today?
• It is employed only for limited uses and during limited
phases of the care process
• mHealth is mainly used for self-management activities
carried out by cancer patients during treatment
• rarely used for decision-making and follow-up activities
• mHealth runs mostly on phone and tablets
• Increasing role of remote monitoring devices
Sources
Nasi G, Cucciniello M, Guerrazzi C, The Role of Mobile
Technologies in Health Care Processes: The Case of Cancer
Supportive Care, J Med Internet Res 2015;17(2):e26

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Structure
1. What is a cancer patient?
2. What cancer patients need from mHealth?
1. Patients’ expectations
2. Usability – Patients’ literacy
3. Large and small developers
4. Interoperability & implementation
5. Building trust - Data protection
3. ECPC’s recommendations

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Usability – Patients’ literacy
• Hardware limitations
• Not all patients are used to smartphones/tablets
• Limited input capabilities
• Design limitation
• Simplicity is key!
• Simple high contrast colors
• Non pop-ups
• Clear navigation
• Simple content organization
• Include images and videos!
• Training for new users (patients)
Sources
Mirkovic J, Kaufman DR, Ruland CM. Supporting Cancer Patients in Illness
Management: Usability Evaluation of a Mobile App. Eysenbach G, ed. JMIR
mHealth and uHealth. 2014;2(3):e33. doi:10.2196/mhealth.3359.

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Structure
1. What is a cancer patient?
2. What cancer patients need from mHealth?
1. Patients’ expectations
2. Usability – Patients’ literacy
3. Large and small developers
4. Interoperability & implementation
5. Building trust - Data protection
3. ECPC’s recommendations

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Motivation is good…
• 46% of mHealth app publishers do it also to help others
… but it is not enough!
• 50% of mHealth app publishers have not released more than
2 mHealth apps
• only 32% of publishers rely on mHealth apps’ revenues
Large & small developers
Large
devps
Small
devps
Need for GUIDELINES
to ensure that
apps are credibe
Source: research2guidance mHealth App Developer Economics survey 2014

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Structure
1. What is a cancer patient?
2. What cancer patients need from mHealth?
1. Patients’ expectations
2. Usability – Patients’ literacy
3. Large and small developers
4. Interoperability & implementation
5. Building trust - Data protection
3. ECPC’s recommendations

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Integration in clinical practice
• Will patients use mHealth apps?
• YES! Patients are ALREADY using them.
• Patient advocate push for:
• Apps designed in partnership with patients
• User-friendly apps
• Scientifically accurate contents
• This gap (hopefully) filled by WG mHealth assessment
guidelines
• Will / can health professionals use mHealth apps?
We don’t know!
• 2 issues
• To have meaningful clinical value, mHealth should be
embedded into care process activities = collaboration with
medical societies, inclusion into care guidelines and pathways
• Digital skills of healthcare professionalsSource
Nasi G, Cucciniello M, Guerrazzi C, The Role of Mobile Technologies in Health
Care Processes: The Case of Cancer Supportive Care, J Med Internet Res
2015;17(2):e26

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Structure
1. What is a cancer patient?
2. What cancer patients need from mHealth?
1. Patients’ expectations
2. Usability – Patients’ literacy
3. Large and small developers
4. Interoperability & implementation
5. Building trust - Data protection
3. ECPC’s recommendations

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Data protection
2 conflicting trends
• Patients want to share their (anonymised) data and
biological material with researchers;
• Regulators, pushed by shaken public opinion, tend to
over-regulate
• Example: European Parliament 1st reading of General Data
Protection Regulation
• Result:
• Art 81 & 83 threatened the existence of biobanks, therefore
hampering research on cancer, particularly those with low
survival rates!
• Code of Conduct is the way ahead!
• Issue: better involve stakeholders (patients)

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Structure
1. What is a cancer patient?
2. What cancer patients need from mHealth?
1. Patients’ expectations
2. Usability – Patients’ literacy
3. Large and small developers
4. Interoperability & implementation
5. Building trust - Data protection
3. ECPC’s recommendations

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ECPC’s recommendations
• Code of Conduct for mHealth apps privacy
• Governance
• We need a solid, visible and transparent governance
• Preferably a European-level public body (European Data
Protection Board?) to ensure harmonisation
• Tiered contribution structure: pay depending on app turnover
• Consent
• Simple, short, without legal jargon
• Code should provide examples, to facilitate work of small
developers
• Anonymisation of data
• Cancer patients believe in research
• There should be an option for developers (particularly academia) to
keep the data collected in an anonymised way
19

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ECPC’s recommendations
• mHealth apps assessment guidelines
• Patient-centeredness by design and by default
• Favour the involvement of patients since the early stage of
development
• Scrutiny of mHealth apps
• (Correct, reliable) information is cancer patients’ first medicine
• Key aspect is credibility!
• Sources of health-related information have to be mentioned in the
app
• There is room for collaboration with medical societies, to check the
validity of the sources
• Scoring system
• Exact score (example: 68/100) provides more precise evaluation of app
• Governance
• Adherence is voluntary, but who will check compliance?
• Possible solution: link the assessment guidelines to the
mHealth app privacy governance 20

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Conclusions
What is still missing to make mHealth a reality?
• For mHealth to deliver results to cancer patients, it has to be
implemented at all stages and in all health care delivery
activities.
• Patients need to be involved at the design phase, to ensure
usability and patient-friendliness
• Regulation is there, but implementation is lagging behind
Cancer patients are key stakeholder to develop Code of Conduct and
mhealth Assessment Guidelines
• Training and awareness
• Patient organizations can be the drive for policy change at national
level
21

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Thank for your attention
Nothing About Us Without Us
ECPC representative in mHealth Working Group:
Kathi Apostolidis: kathi.apostolidis@ecpc.org
Public Affairs Coordinator
Francesco Florindi: francesco.florindi@ecpc.org
@cancereu ; @francescoflo
European Cancer Patient Coalition
ECPCtv