Are patients prepared to cope with digital health?

Usman Khan
Director of the European Patients’ Forum

Usman Khan was one of the patients’ representatives at this year’s European Health Forum Gastein. In a workshop full of digital experts what would be better than asking about the views of users and patients about the latest developments within the digital health world.

DCS:  Hi Usman! Thank you for letting us have a conversation with you about the digital health workshop where you were one of the panelists. But, I believe before starting, we should put our readers into context. In order to do that, could you tell us a bit about yourself and your work?

UK: Currently, I am working as the director of the European Patients’ Forum (EPF). The EPF is a network of networks which looks after 71 patient-lead European organisations. We seek to drive forward and get the patient perspective to European policymakers; strengthening patients’ voice through advocacy, education, and training. Besides, we are involved in projects within Horizon 2020 where we are also trying to make that difference.

DCS: Since the main theme of this session was the future of digital health, could you tell us a bit from your perspective how you see digital health integrated into the work of the EPF?

UK: Digital is very important for us because so many aspects of health include digital. But what the notion of digital gives is a little bit of a restart, a new launching point. If you look at healthcare, it´s naturally paternalistic. So, what it does is that it glues on elements of safe patient engagement to this paternalistic system. What digital allows us to do is to reset and say: this needs to be, and it must be patient-led, patient-focused, patient-oriented. And, that´s why the EPF is very committed to understand and to help to shape the digital agenda.

DCS: We have seen these days and within the last years that digital health is evolving at a breakneck pace. Do you think patients will be able to cope and adapt to this fast-pace digital transition that is already happening?

UK: I think they are showing that they are. And I think they are taking the lead. If you look, for example, at people wearing smartwatches or having technology in their house: more and more people are learning to work with digital. They don´t view it as health digital, but they are simply using it.

DCS: How about the possible inequalities that might arise with the adaptation to digital?

UK: Yes, there is a massive risk of socioeconomic, cultural, or geographic inequalities developing around digital. Part of what the EPF does is to show or do what we can do to stop that from happening.

But the basic idea is that we need to understand how to engage with digital. It shouldn´t be a paternalistic model; it should be very much around co-creating a patient and patient-driven solution.

DCS: What would you like to see next year in Gastein, and what would you recommend to ensure a stronger patients’ voice?

UK: Well, I think you´ve answered the question because I´ve been already to several EHFG’s, and I think disruption is a very healthy theme to have. But what we haven´t done is to have fundamentally disruptive stakeholders come to Gastein. I think it would be great to have two levels of disruption. Firstly, we need a stronger patient voice, and the nobody-left-outside exhibition was a great example of where you can start. And then, secondly, we should jointly try to get non-health actors on board who are rarely seen at health events: where is Google, where is Facebook, where is Amazon? These would be my main two recommendations for future EHFG editions.

This interview was conducted by a Young Gasteiner Diana Castro Sandoval, Projects and Advocacy Manager at the European Forum For Primary Care, Spain

When epidemiology meets Big Data (F5)

What are the chances to epidemiological intelligence?

When thinking about the usage of data in a health context, what is your first association? Is it Google and other ‘data leeches‘ of the GAFA-kind (Google, Apple, Facebook, Amazon)? Linked to that, is it concerns such as data privacy, data security? A lack of standards? The fear that the internet has the memory of an elephant and never forgets the information it has received?

Let’s assume that ongoing discussions and public awareness of the potential of data analysis have improved the reputation of Big Data and that there might be other associations such as „Opportunity!“ „Prevention!“ „Efficiency!“ or „Quality“ come up to your mind when hearing the term.

With this in mind, panellists at EHFG session about epidemiology meeting Big Data showcased some excellent examples on how data might actually advance public health questions in the broader context of epidemiology. 

Starting with Martin Seychell (Deputy Director-General for Health and Food Safety of the European Commission), the panel focussed on potential new paths towards public health surveillance. Seychall placed emphasis on how to exchange electronic health records within the member states – which appears to be a particularly demanding topic considering that most of the states do not even have an overarching solution nationally (not to mention names, but it is noticeable that even economically well-off countries have not managed to set up the needed infrastructure in the year 2019).

There was murmuring in the room by the audience as Seychall condensed the challenges of data exchange within the EU to the GDPR as a building block. 

Most participants seemed to agree to the point that data privacy and ethics are the most substantial foundations when wanting to profit from health surveillance programs. Therefore, Philip AbdelMalik, epidemiologist of the World Health Organisation, hit a sweet spot when stating that data is the most valuable resource on earth to date.

Building on that argument, Tyra Grove Krause, Head of Department of Infectious Disease Epidemiology & Prevention at Statens Serum Institut, demonstrated how Danish citizens profit from public registers on the effectiveness and safety of vaccines. She highlighted the advantages (e.g. real-time, cost-efficient) but also the pitfalls (e.g., need of new algorithms, technical challenges) of data-driven information systems, culminating in the statement that we as a society need to embrace imperfect data. 

But are we willing to do so? And do we even know about the influence that data has on our behaviours?

The second session tried to approach the topic – with a prominent example of social media and its (unwanted) effects on vaccine hesitancy vs promotion – but it seems as there is much research to be done to answer that question. 

Overall, taking into consideration the many questions that remain to the usage of data in a public health context, the audience agreed that it should be used more than is currently the case.

However, the associations as stated in the beginning remain, and we need some success stories to disprove the myth that data usage goes hand in hand with data misusage – but has a lot of intelligent solutions to the remaining epidemiological challenges.

This Blog was written by Young Gasteiner Laura Oschmann.

EHFG Closing Plenary: Climate Change – Are we waking up too late for this Public Health Emergency?

Climate change seems to be buzzing these days and this afternoon’s plenary session, which also officially closed this year’s Gastein Forum, was another moment to properly address this issue. Just last week, leaders at the United Nations Climate Action Summit boosted climate action momentum, demonstrating recognition that the pace of climate action must be rapidly accelerated. And 65 countries committed to cut greenhouse gas emissions to net zero by 2050, while 70 countries announced they will either boost their national action plans by 2020 or have started the process of doing so.

But haven’t we been pledging these goals and recognizing the problem for the past years? Aren’t we already reaping what we’ve been sewing? And what’s health got to do with it?

Andy Haines, Professor of Public Health at London School of Hygiene and Tropical Medicine joined the Plenary via Skype (giving a great do-what-you-preach example reducing greatly his personal carbon footprint) and briefly presented us the evidence of what are the ongoing effects of climate change on Health. Professor Andy Haines categorized these effects into direct effects, indirect effects and climate effects mediated through social systems.

As an example, we have been more aware of heatwaves and their effects on raising mortality, with evidence piling up, and the same with extreme cold, especially in areas with less robust housing. We have also been seeing how climate changes influence the development of epidemics. Climate extremes, especially excessive rainfall or drought can disrupt the environment bringing some animal species into closer contact with populations, or significantly increase vector breeding sites. Practical evidence of this is the enlargement of previously narrow band of desert in sub-Saharan Arica (in which Neisseria meningitides infections traditionally occur), as drought spread to involve Uganda and Tanzania.

But if we know this for several years, what’s been missing? Has the communication been effectively delivered so far? Are data scientists passing their message through? This seems to be an emerging problem now, regardless of being in the literature for more than 20 years.

In Public Health we’re used to think about prevention and the cause of the cause. Are we engaged enough in preventing all these health impacting events from happening in the first place, as we’re mounting evidence that climate change is the cause of the cause?

During this session we were also all challenged to lead the cause, using our system thinking, data analysis skills and with an eye on equity. We were urged to change the way we look at modern healthcare with a new scope on reducing carbon foot printing while maintaining efficiency, quality of care for patients and reducing the costs associated with it. It’s up to Public Health to decarbonize the way medicine is done. It’s up to us.

This Blog was written by Young Gasteiner Guilherme Gonçalves Duarte.

A European Cancer Plan: Make it disruptive! (F12)

There were many take home messages from this session at the EHFG 2019, but to just state one would be very unfair. What was apparent, however, was that the development of a European cancer plan is desired, but we probably won’t see such a document anytime soon. Peter O’Donnell kicked off the session by outlining the agenda vocalising that a European cancer plan is European and not national. He outlined the need for key performance indicators (KPIs) in this area. Nils Wilking, Associate Professor, Institute of Health Economics, Karolinska Institutet, quickly followed presenting his comparison report on “Cancer in Europe 2019 – Disease Burden, Costs and Access to Medicines”. This will be available on the Karolinska Institutet website in November 2019 for those of you who are interested. Surprisingly, Nils reported that 42 – 45% of all cancers are preventable and that all EU countries roughly spend the same percentage of their healthcare budget expenditure on cancer medicines.

Tit Albreht, Lead, IPAAC Joint Action & Senior Health Services and Health Systems Researcher, Institute of Public Health, Slovenia, made a very important point that patient involvement was high in the design phase of cancer services, but decreased in the implementation and evaluation phases. This is contrary to public opinion in this field. We need to invest more in monitoring systems like France has.

Barbara Wilson, Founder of Working with Cancer, emphasised the importance of the survivorship still being on the agenda for discussion. However, she argued that cancer should be recognised as a disability and this is why disability adjusted life years (DALYs) are the most accurate health metric in economic evaluations which analyse cancer patients. Martin Seychell, Deputy Director-General, European Commission Directorate-General for Health and Food Safety (DG SANTE), scared us by saying that all projections show that cancer is the leading cause of death in Europe. He also talked about how Human Papilloma Virus (HPV) prevention in males can be overlooked in some European countries. Recently, in Ireland, the Health Information Quality Authority (HIQA) has recommended that a more effective version of the HPV vaccine be given to girls and extended to boys beginning in September 2019. Sometimes, as Ireland is not on the mainland, we can feel a bit disconnected from Brussels. However, we are implementing recommended EU health polices before other EU countries.

Mike Morrissey, Chief Executive Officer, ECCO and Kathi Apostolidis, President, ECPC engaged in panel discussions where it was stated that for a European Cancer plan to really work, EU member states must agree on and implement certain key universal rules in their own National Cancer Control Programmes (NCCP) and build on that. In Ireland, our NCCP was established in 2007 to ensure that all elements of cancer policy are delivered to the maximum possible extent. Our NCCP continues to reorganise cancer services to achieve better outcomes for patients. In fact, I was recently involved in a study where I argued that the subcutaneous trastuzumab formulation for the treatment of HER-2 positive breast cancer should be taken out of the secondary care setting and supplied to patients via their local pharmacy for self-injection at home. (1) This would reduce the loss of productivity for all involved as patients can avoid going to hospital. I believe it is this patient-centric rationale that should be entwined throughout the development of our future European Cancer plan.

This workshop was organised by European Cancer Organisation (ECCO), European Federation of Pharmaceutical Industries & Associations (EFPIA), European Cancer Patient Coalition (ECPC) and The Organisation of European Cancer Institutes (OECI) and moderated by Peter O’Donnell, Brussels correspondent, APM Health Europe.

References

  • O’Brien GL, O’Mahony C, Cooke K, Kinneally A, Sinnott SJ, Walshe V, Mulcahy M, Byrne S. Cost Minimization Analysis of Intravenous or Subcutaneous Trastuzumab Treatment in Patients With HER2-Positive Breast Cancer in Ireland. Clinical breast cancer. 2019. https://doi.org/10.1016/j.clbc.2019.01.011

This blog was written by the Young Gasteiner Gary L O’Brien.

Can People Afford to Pay for Healthcare? New Evidence on Financial Protection in Europe (F7)

“No one should have to choose between healthcare and other basic needs” – this essential message was delivered by Tamás Evetovits, Head of the WHO Barcelona Office for Health Systems Strengthening, WHO Regional Office for Europe, in this afternoon workshop organised by World Health Organisation (WHO) Regional Office for Europe and moderated by the witty Prof. Charles Normand.

Tamás engaged the audience by using the metaphor of an umbrella and its strength in different weather conditions to illustrate the durability of universal health coverage (UHC). He enforced that UHC means that no one should experience financial hardship and unmet need. An evocative video showed the real life examples of people like Lisa, a patient who had to choose between paying either for her electricity bill or prescription medicines.

Jonathan Cylus, Economist and London Hub Coordinator, European Observatory on Health Systems and Policies, discussed two metrics used to capture financial hardship: catastrophic out of pocket (OOP) payments and impoverishing OOP payments. Catastrophic OOP payments are those greater than 40% of a household’s capacity to pay after deducting standard needs, while impoverishing OOP payments are those that, once paid, cause a household to fall below the poverty line. Johnathan discussed the bespoke WHO methodology used in the “Can people afford to pay for health care? New evidence on financial protection in Europe (2019)” regional report. (1)

Sarah Thomson, Senior Health Financing Specialist, WHO Barcelona Office for Health Systems Strengthening, WHO Regional Office for Europe elaborated on how we can we improve financial protection especially for the poor.

Triin Habicht, WHO consultant & former Head of the Department of Health System Development, Ministry of Social Affairs, Estonia, discussed the reform of Estonia’s pharmaceutical co-payment system. Post reform, 134,000 people per year now benefit from additional coverage. Triin also alluded to the electronic health insurance fund (EHIF): when a patient goes into the pharmacy to acquire prescription medicines, their specific co-payment value owed adjusts automatically because of the EHIF. As a practising pharmacist, I would love to see this reformed system implemented in my home country of Ireland, as it would mean patients would not overpay as is sometimes the case.

Kaisa Immonen, Director of Policy, European Patients’ Forum argued that we all need to “look behind the figures” and increase public patient involvement (PPI) in the area of healthcare access. Stefan Eichwalder, Cabinet of the Minister, Federal Ministry of Labour, Social Affairs, Health and Consumer Protection, Austria gave an overview of his country’s complex healthcare system. Martin Seychell, Deputy Director-General, European Commission Directorate-General for Health and Food Safety (DG SANTE) told the audience “not to rely too much on the headline figures of just how many people are covered “ and “look at what services actually are covered/offered“. He added that if we not cover a lot of services then we have a lot of unmet need.

After an animated panel discussion, Charles Normand concluded the session by elaborating on equity in healthcare saying access can be disease-specific, so choosing the right disease for yourself can be crucial. The audience burst into laughter.

References

  • Can people afford to pay for health care? New evidence on financial protection in Europe (2019), By Sarah Thomson, Jonathan Cylus and Tamás Evetovits, 2019, xv + 116 pages, ISBN 978 92 890 5405 8, https://apps.who.int/iris/bitstream/handle/10665/311654/9789289054058-eng.pdf?sequence=1&isAllowed=y

This Blog was written by the Young Gasteiner Gary L O’Brien