PROGRESSIVE works together with an Advisory Group (AG) of “standardisation” and “active and healthy ageing” experts and stakeholder organisations. Viviane von Döllen works for Luxembourg’s largest community nursing, health and social care service provider. In this interview, she provides her views on how standards can be useful for society, the importance of interoperability and the main priorities for standardisation in the coming years.
How do you “feel” about or how well are you acquainted with standards?
As an organisation we are very well acquainted with the notions of standards, in particular nursing standards. Our Telecare care service Sécher Doheem has been ISO certified since 2005 (currently ISO 9001:2015).
SHD has a digitalised system to deal with all aspects of our business from client demands/needs to planning and organising care interventions, quality control and audit, customer feedback, staff and other resource management and financial billing and control. Everything which is directly related to our clients is recorded within a digital individual customer file.
SHD has been an active contributor to the Luxembourg digital shared patient file system (DSP – Dossier de Soins Partagés) so that the medical data can be complemented with care and therapeutic data.
How do you think standards are useful for society as a whole and for more vulnerable consumers/citizens?
Standards are very important to ensure that people know what the product or service they are receiving really entails. Without standards, ordinary people have no way of knowing what they are purchasing or receiving. In particular, they are unable to distinguish between a good product/service or a bad one. Thus relevant for society as a whole regardless of the field of application.
Standards are particularly important for vulnerable people such as the disabled and senior citizens as negative experiences can seriously affect the health and well-being of these people. Standard do not only help to clarify what products/ services are being provided but they also help to regulate how they are being used. Quality and safety standards are the most important as far as vulnerable people are concerned.
How do you see in particular the importance of interoperability, i.e. smoothly interworking services, given the rapid spread of digitalisation and interactive service platforms?
The importance of standards and norms in relation to technologies is increasing all the time as digitalisation is affecting every area of modern living. Not so long ago, digitalisation was something people were confronted with in factories and offices as part of their professional live, while the use for normal day to day living was limited to modes of transport (e.g. cars) and entertainment (e.g. TV sets). These days, digitalisation affects how we buy food, book our holidays, pay our bills and even see our blood test results. It’s everywhere.
Children, young people and adults who are still professionally active find them themselves constantly buying new computers, laptops, smartphones and other electronic tools to run their lives and their homes. Of course each technology providers wants to abandon the previously bought rival product and buy his instead. Some companies even manage to convince us to buy a newer version of their product every couple of years and long before they are broken! To do this, they resort to more attractive and faster functions which of course cannot work on the older product.
Every day, new smart applications and platforms are created addressing some or other so called need that we did not even know we had until the advertisers told us so.
Besides the obvious costs to consumers and the unnecessary electronic waste, the very tools that are being designed to simplify our life are in fact making life more complex and complicated. While the younger generations may be irritated about having to use so many different digital machines (including different remote control tools) older and other vulnerable people are unable to cope with this.
One major way of dealing with this issue is through the use of standards of interoperability and policies, the promotion of co-creation and policies related to standardisation (e.g. EU Red directive on mobile phone charger campaign reducing the number of different mobile phone types of charges to two main standards: the micro-USB and the iOS lightening charger).
What are, to your opinion, the main priorities for standardization in the coming years to sustain active and healthy ageing?
There are a vast amount of products and services that are being developed to promote and sustain active and healthy aging, whether out of one of the various research programmes (AAL, H2020) or independent industrial development. All would benefit from standardisation but in particular those that have a direct impact on the safety and health of ill and disabled people (e.g. Telecare, Telemedicine, therapeutic serious gaming, electronic shared personal medical records).
For us, as care providers, the top priority should be the standardisation of personal medical records so that they can easily be shared between the various health care actors within a country (primary, secondary and tertiary health care, community care providers, therapeutic and complementary care practitioners) but also within the whole of the EU. Given the single market, the free movement of labour etc. EU citizens spend a lot of time in EU countries other than the one of the official residence. Many people cross borders on a daily basis and they should be able to receive the best possible health care wherever they need it. Host health care facilities can only really provide that care if they have immediate access to all relevant background health information and do not have to first waste time and other resources to assess what the optimal treatment should be.
At present, each EU country is trying to develop their own national electronic shared personal health records system, some managing better than others and it is difficult to see how this could really be implemented at an EU level.
I strongly believe that standardisation in this use case should happen at 4 levels. The technical ICT level, the clinical level, user level, health/social care system level. At each level simplicity and the 6 GDPR principles.
- ICT level: a project should get the clear EU mandate to evaluate all the existing standards and come up with the optimal one for a EU shared personal health record. If national systems do not already use those standards, they should have to develop programs to convert the relevant clinical data so that it can be transferred to the EU record. EU financial support should be made available to allow all countries to comply rapidly.
- Clinical level: a project should get a clear EU mandate to establish the common minimum data set of the most commonly needed and relevant clinical information. The GDPR principle of “purpose limitation” should be one of the inclusion/exclusion process. Clear standards should be chosen on how this information is represented in the EU shared personal health record (e.g. blood pressure measurements are recorded differently in UK and Luxembourg, fasting glucose is recorded differently in France than in Luxembourg…)
- User level: In order to make sure that this EU electronic shared personal health record truly helps to sustain active and healthy aging, it has to become more than should a static medical information sharing tool for the medical profession. In fact, what it needs to become is a tool that will help each user to oversee and manage their own health, as well as their health record to share with the health professionals EU wide when and as needed. Thus, besides being simple to use and contain all the relevant clinical data, the user needs to be able link his/her favourite personal tools and applications (e.g. electronic scales, blood pressure, blood glucose or health measuring tool; Fitbit or other activity/ sports wearable; MyFitnessPal, iHealth, Tactio or other health/diet/activity/wellbeing analysis App.) This area will of course require a great deal of technical standardisation to make sure that everything is interoperable and communicates smoothly so that the users have no problems with it. However, the decision on what item or App should be incorporated first should not just be a technical or clinical decision but also a user decision. In other words, market indicators which reflect user popularity should also play a major part. For example, heart and activity monitors issued out of the sports and wellbeing domain may not be clinically as accurate as some proper medical devises but as they are closes to the end-users perceived needs, they are used more and therefore should be included.
- Health/social care system: Health information should be complemented with information related to the financial aspects. It should include information about each individual user’s (1 user per card from birth to death) health insurance whether a state scheme, employer related or private complementary insurance (e.g. DKV, BUPA, MACIF). Ideally, from a user’s point of view, even punctual short term travel insurance should be included. Given some standardisation regarding how this information is formatted, one could even imagine a EU health insurance clearing house which would send medical bills to the respective insurance schemes so that they in turn can bill the user. This way, the user would not need to worry about the health costs when traveling within the EU.
All the elements would benefit for all EU citizens but would be of particular benefit to aging and vulnerable people.
At each level, specific projects should be mandated which the specific tasks. Each Consortium should include end-user organisation (as is already the case for AAL and H2020) In addition, all IoT elements should require a special CE label. End users should be involved in establishing the label criteria. Older adults could play a major role in this process.
Why did you decide to take part in the PROGRESSIVE Advisory Board? What do you expect from the project and/or what have you already learned or achieved by interacting with the project?
As a community nursing and care provider, we are in daily contact with people in need of care. The majority are aging people. One of our key aims is to help these people to remain living autonomously in their own home for as long as they wish to do so. Besides their health, their general well-being and their safety are also our concern. With provide high quality nursing, therapeutic and domestic care as well as a well-developed Community Alarm and Telecare service.
For us, quality and standards go hand in hand as they help to ensure that a certain quality is being provided systematically all the time.
As more and more ICT tools are being used by our staff to do their jobs and our clients are starting to use them too, SHD wants to always be aware of the newest opportunities and know what is safe and of highest quality.
Taking part in the PROGRESSIVE Advisory Board gives us on the one hand some insight into how existing standards (how they evolve and where to find them) and gives us the opportunity to influence (in however small way) the developments in this area.
About Stëftung Hëllef Doheem
Stëftung Hëllef Doheem (SHD, meaning ‘help at home’) is the largest not for profit community nursing, health and social care Provider in the Grand Duchy of Luxembourg. Besides general nursing activities, support in acts of daily living (ADL) and domestic support task, SHD also provides specialised nursing care as well as palliative / end of life care. Although SHD caters for all age groups it specialises in the care of elderly people. The care provided is 360° around the needs of each individual client through the support of a range of health professionals such as physiotherapists, occupational therapists, psychologists and dieticians. It also manages a number of Day Care centres which are caring for people with severe disabilities as well people suffering from mild to severe forms of dementia.
Around 5 000 clients per year are cared for by SHD staff care for on a long term basis. About 1 % of them are aged under 20 and 12 % are over 90 years old. Almost 70% of SHD’s long term care customers are in the 70 to 90 age bracket. In addition, SHD’s nurses and treat around 13 000 short term patients (i.e. injections, bandages, drips, blood tests….)
SHD is also the national Telecare Provider called Sécher Doheem (SD meaning safe at home). The multidisciplinary team of SD (ICT technicians, specialised nurses and call centre operators) have been introducing Telecare technologies such as fall detectors and epilepsy detection technologies since 2003. Around 5 000 Telecare customers generate around 55 000 alarms per year of which around 6 500 require some form of active help interventions.
The Service de développement organisationnel (DO) assures the foundation’s project management office (PMO) for both internal projects related to the development of the organisation as such (including process management and performance management) and has actively contributed to a number of national and international projects.
Since 2016 SHD is licenced by the Luxembourg Ministry for higher education as a research organisation. The research licence and funding eligibility through the Fond national de la recherche (FNR) is valid until 31 December 2023.
About Viviane von Döllen
Viviane von Döllen (B.A. (Hons.); M.A.; SRN) is a qualified general nurse and has a comparative studies master. She has worked for many years in the NHS and Scottish local government in various functions (i.e. social researcher, strategic and service development manager as well as in quality and performance review). She has also gained technical and Call Centre management experience while working for Digital Equipment Corporation in Ayr, Scotland. From October 2000 to March 2016, she set up, developed and assumed the day to day management of Sécher Doheem the Telecare/Telehealth Service of Stëftung Hëllef Doheem. Since April 2016 to date, Viviane von Döllen is a member of the Service développement organisationnel of SHD where she is actively in a number of different types in-house as well as European projects (AAL and H2020)
On a private basis, Viviane von Döllen is an Expert Evaluator and Rapporteur for the AAL Joint Program since 2015. She has undertaken numerous Mid-term and final evaluations, has participated at two Stakeholders meetings and co-chaired two panel meetings. In 2016, she was one of the judges of the first AAL joint program IoT challenge prize.