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A3 ACTION GROUP:

Frailty and functional decline both physical and cognitive

Minutes 7th Meeting

Room JDE 51 Committee of the RegionsBâtiment Jacques Delors Rue Belliard 99-101

Brussels, 22nd October, 2014

APPROUVED BY PARTICIPANTS

The 7th meeting of the Action Group on Frailty (A3) took place in Brussels on the 22 nd of October, and was chaired by the European Commission (EC) following the approved agenda (annex 1).

For practical reasons this meeting was split into two sessions; the morning session was devoted to common work discussion and only partners involved in these tasks were present and the afternoon session open to all partners in the Action Group (AG).

Attending participants (annex 2):

Were invited to present their work on the collaborative tasks per subgroup.

Were invited to present their individual work.

Were informed on the outcomes of the monitoring process.

Were informed about next steps and upcoming Conference of Partners.

MORNING SESSION

Presentations from the Commission

Presentation of the Agenda (EC)

Inés Garcia Sanchez, European Commission (IGS)

The morning was opened with the presentation of the Agenda of the morning session.

Presentation of the collaborative work ( IGS)

IGS welcomed and thanked participants for attending and explained the main objectives of this session. Emphasis was placed on finalising deliverables that are due for XII-2014 in order to report back on progress. It is especially important, taking into account the new College of Commissioners and Directorate-General of DG SANCO, to make a case for building on the work undertaken by A3 AG. It is the right timing after 3 years work to show some results and also to show the potential for future actions and policy inspiration. A consistent narrative, showing the work process, preliminary achievements and promising future areas of work is important and we are working on producing a document which tells about the “story of A3 AG”.

This morning session is the opportunity for sub-group members to fine-tune their deliverables and to try to focus on the added value and what specific products will be ready to show in CoP in order to concentrate on these aspects when reporting to the whole group in the afternoon.

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Ines presented the main features of the 5 subgroups collaborative work:

• Voluntary participation: all welcome, few active• Evidence based statements & recommendations• Deliverables result from common work process on specific topics • Final drafts have been agreed among partners in sub-group

She suggested also the possibility of having a selection of articles “ a what to read if you are interested in frailty prevention” based on the bibliography already used by the sub-groups. It was accepted as a good product and not needing too much extra work to present also as common work. Afterwards IGS asked the participants to gather in the respective subgroups and work on the collaborative work taking into account the following questions:

What is the added value of this work?

Map useful interventions/ where knowledge has been put into practice Common approach to a specific issue Proactive instead of reactive approach Identify what has to be done in specific areas Putting together another way of thinking Other ?

What follows?

E.g. Piloting the guidelines E.g. Prepare a proposal for funding E.g. Give visibility (to be discussed at afternoon session)

The 5 subgroups have reported back to the audience in the afternoon (see section on the collaborative work; sub-groups report back to the audience p. 3-6).

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AFTERNOON SESSION

Presentations from the Commission

Presentation of the Agenda and current state of EIP AHA (EC)

Jorge Pinto Antunes, European Commission (JPA)

JPA summarised the current state and position of the EIP on AHA in the EC. Amidst a new College of Commissioners, it is increasingly important for partners in A3 to make a case for what they have been doing in the area of frailty. The Commission will be increasingly about team-work, and the EIP has already been a strong case of collaboration across services of the Commission, such as DG SANCO, CNECT and RTD.

The communication document was discussed, and JPA called for input from A3 partners to tell the Commission about the added-value of working with the partnerships. Better than a narrative, would be examples — and A3 deliverables are good examples of this.

JPA explained the ways in which the EIP on AHA has been disseminating work and what has been done by Action Groups, in international conferences and at the WHO. More opportunities for collaborations with these organisations are foreseen. However it is also important to spread the word beyond industrial consortia, regional governments and academia — going to the nation state level is important.

Social Protection Committee Long Term Care Report was discussed, where member states look at solutions and what should be done about large challenges such as ageing. The partnership, and the work of the Action Groups, provided important examples here, and JPA congratulated the AG partners here.

Funding on frailty was also discussed: increasingly calls under H2020 and the Public Health Programme are found in ageing issues and frailty issues. There, JPA noted that few EIP on AHA partners participated in the new calls. JPA noted that there is a balance for funding: the Commission has created several new large projects providing funding, but partners must also be proactive in pushing for new opportunities. Evidence was also noted as very important to show progression to decision makers.

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In the questions, Antonio Cano noted that the changing constituents of A3, which meets periodically, can hinder progress on deliverables and achievements. However, he noted that putting together ~1000 parties across Europe interested in ageing is an achievement in itself.

Monitoring of EIP Results

Marianne van den Berg (MvdB)

MvdB reminded partners that monitoring has two parts: process and outcome. She reiterated her promise of two years ago: we are not comparing individual commitments. It is about gaining insight to what is happening, and what the additional value is.

Indicators were chosen according to the Salience, Credibility, Legitimacy framework. The question is how to proceed from here? MvdB explained the linkage model proposed, in terms of Quality of Life, Sustainabiity and Innovation & Growth.

Sheemphasised that the monitoring comprises of the quantitative linkage model and a more qualitative approach which values all members’ provided data using the cluster approach, as information such as the frailty index is inherently useful and interesting without being modelled.

The next steps, MvdB explained, include the development and distribution of an Excel-based tool, which will in the end be a web-based tool, that members can use both with the Commission and independently for their own purposes. Input of members, and a more in-depth discussion on data provision, will be required at the December 1st meeting. Two commitments for each AG will be noted with have a technical and high amount of reported data, which will be chosen based on the Outcome Questionnaire. Any members that are either interested in the technical side of the monitoring or have very good data, should communicate with the Commission (e.g. with Anna, Ines or Jorge) to get involved.

Collaborative work; sub-groups report back to the audienceFrailty in general and physical decline

Leocadio Rodriguez Mañas (Servicio Madrileño de Salud)

Deliverables, originally forecast for May, should be ready in ~1 month — currently undergoing final refinements. Deliverables indicate simple, feasible and brief care approaches, as well as provide a repository of quality indicators that can be used in different settings in relation to frailty and physical decline.

Other deliverables to be released (December or first quarter of 2015): establishing priorities in research on frailty and a roadmap for implementation; establishing a more precise set of requirements and guidelines about quality of good practices. Important for both A3 and the Reference Sites.

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Cognitive decline

Antonio Cano (University of Valencia)

The subgroup’s first task, a review of evolution of MCI (mild cognitive impairment) to dementia will be published in February 2015 special issue of Maturitas. The second task of the subgroup, the impact of serious games on cognitive decline, links 3D virtual tasks to the assessment of cognitive function, giving close consideration to usability and validation.

The tasks assessing complementarities in four different European longitudinal studies on cognitive decline, to work out heterogeneities and any increase in assessment power possible through aggregation has begun.

The task on creating a pan-European PhD programme on healthy ageing issues is still forthcoming. This has taken some discussion, because to get a common PhD there are many difficulties combining the education systems of different Member States. While it is not abandoned as a task, to follow the rules in each of the countries, get approval in each country, and then propose a common body of knowledge to be transmitted is difficult. ITN - the International Trainee Network - has the EJD (European Joint Doctorate) which makes some of these objectives possible through Marie Curie Actions in H2020. While you have to compete with other consortia in doing so, the present call is open (with a January end), it is the current consideration.

Nutrition

Sandra Pais (School of Health, University of Algarve) [in lieu of Maddalena Illario]

The group has met often using videoconferencing. A common understanding of malnutrition has been developed: looking at both elderly people who have undernutrition, those with obesity, and those with sarcopenic obesity. A common vision was created where effective intervention should take into account the entirety of needs that influence the adequacy of nutrition, taking into account pan-European cultural differences in food preference, individual choices in food, and food production systems across Europe. A ‘pyramid’ of intervention was devised, ranging from food production and distribution systems, through common cooking processes, taste steering (teaching healthy eating), supplementation, enteral-parental interventions, and medication.

Intervention has been proposed at different levels: the community level, assisted & residential facility level, and hospital level. The nutritional assessment and stratification for each group will form a basis for interventions. The different levels of intervention relate to different areas on the pyramid. The top of the pyramid focusses on nutrition for therapy, whereas the base refers more to nutrition for wellbeing, however there are overlaps in the central portion. Monitoring of nutritional status change using horizontal tools is crucial.

Care givers and dependency

William Molloy (University College Cork) and Francesc Orfila (IDIAP Jordi Gol)

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William MolloyFrailty as a state of vulnerability that causes risks of institutionalisation, hospitalisation and death. In Ireland, 803 people screened and followed for a year, and compared to the Clinical Frailty Scale (CFS). Scores concern and score caregiver capacity using a simple score sheet. Two published papers have resulted from this, plus one under review and one accepted. This study looks at high risk individuals only, so fundamentally looks at a different group of people than the CFS. High risk individuals in this methodology interestingly have a higher risk of outcomes, and the model of frailty here, looking at these outcomes of interest, is better than the CFS. The fundamental point: a huge contribution to risk is the caregiver network rather than the person themselves. Look at the network around the person rather than just the person: even using a 5 point Likert scale to assess can make a huge improvement to the assessment of risk.

Fracesc OrfilaTwo samples: one in Barcelona from people who need home-care:Caregiver network in these samples correlate well with several indicators, such as morbidity, dementia, clinical risk and complexity. The tool correlates well with morbidity indicator which initially shows promise for validity. Non-home-care data from Porto: earlier stages but comparisons being made with Barcelona.Achievement with the caregivers sub group: - work on new approach to frailty screening- tool translated to Portugal and Spain- training in Porto, Ireland and Barcelona- Focus groups and problems using th etool identified- Four publications with more written/submitted- H2020 application with Turkey, Canada, Australia, Portugal, Spain, Germany and UK.

Physical activity

Miriam Vollenbroek-Hutten (Universiteit Twente)

The size of the physical activity group made it quite challenging to work on deliverables together. Characteristics of the deliverable: a type of “white paper” to disseminate up to date information to people such a clinicians, researchers, looking to find their way into physical activity and frailty. It looks at what we mean by physical activity, how it is operationalised or measured, current research issues and developing interventions. One important aspect: physical activity is separate from physical functioning, which is addressed elsewhere.

Main results: a good definition of physical activity; overview of measurements being used; a spreadsheet with detailed analysis of the commitments — parallels with the Monitoring Framework exist.

What is the added value? Increased standardisation of physical activity screening, and identification of issues. The follow up will be finishing and publishing the white paper, assessing willingness of groups to share data on physical activity, and ideally, a database for use of the information.

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Floor discussion for all sub-group presentations

JPA invited the floor to think about how we can make the most of the collaborative work undertaken so far. How can we present this good work in an inspirational and helpful form for politician and care professionals — as a tool for change?

Reference sites, it was noted, need to work with the deliverables to integrate findings from A3 into the good practices. Opportunities for collaboration within A3 were also noted, such as overlaps between the Frailty in general and physical decline subgroup and the Physical activity sub group. It was noted that the AG should perhaps merge deliverables into a fewer number of ‘white paper’ style deliverables.

However, it was also noted that it is important to build more well performing areas and projects and raise the bar in general, rather than just focusing on communication between reference sites.

The topic of communication was also raised — visualisation of information through mediums such as video is perhaps more important than more heavy documents, in order to disseminate to a wide public with different experiences. However, it is important to find a balance between the level of detail and complexity of the deliverables, and the communication. Simplicity, in terms of understandability and accessibility, was raised as key.

How do we shift the focus from knowledge to ‘intelligence’ about how to do everything together in order to reach a ‘critical mass’? ‘Strategically knitting’ good practices together in a system is key — that is where the Reference Sites have added value, which is a value that has not perhaps yet been exploited.

Linking it to the spreadsheet being created by the Physical activity group, an important part of this ‘knitting’ is open data. Compiling data is money-saving and increases analytical power — how can we scale up, show the amount of data we already have (through EU financial support in many cases), and take advantage of similar data. In Physical activity alone, 2000 observations have been identified. Can these be compiled at all?

It was noted that to present outcomes from AGs at conferences, then it is worth co-ordinating methods between them, as the Monitoring Framework already points to a certain unification of typologies.

A reading list combining select high quality academic and practical references could be created and disseminated, to spread high quality information.

JPA noted that something straightforward is likely to be necessary. Linkages are necessary between the two EIP on AHA tracks of Reference Sites and Action Groups. However, JPA does not think we are there yet. The work of the AGs is currently too much in this room, rather than getting to grips with having a straightforward message to pass on to people. The idea of a reading list with reports and examples seems interesting, and something which we could be working toward. Somehow in addition though, we need to show the existence of a ‘programme’, providing and conveying

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perspective into the future — as we started a small part of something by meeting together. We need a message regarding where we are, how we plan to scale up and what we plan to scale up. However, first we need to get to grips with a simple message — what should frailty be about, how should we go about it, how have we already started?

It was noted in response to this that some ministries and public bodies are already working on such a message. Is it possible to give these examples — gathered here and gathered elsewhere — to other regions which are not working on this?

Some sort of tangible combined product taking stock may be necessary — whether it be a paper, a position paper, a white paper, a collection of papers. The phrase ‘ten point’ was used several times, although it was also noted that what this would be was unclear, but it which need to be translated into targeted materials. Perhaps they would be ‘ten main things’ which have been done, and could be demonstrably useful as tools for others. However, it was noted that selecting the highlights of this common task will be difficult, and perhaps a more technical task for the Commission based on axioms such as scalability or collaboration. It was concluded that partners could produce a “Ten Main messages document”, of which info-graphic would be a first draft; that EC would circulate a first draft to coordinators and then rest of group/document to be finalized for March Summit.

Individual commitments follow up

State of play summary

Anna Carta, EC (AC)

AC gave an overview of the deliverables expected for 2014 of individual commitments (ppp in Annex) Only deliverables that be finalised in 2014 with positive results will have the possibility to be showcased at the CoP and the European Innovation Summit on Active and Healthy Ageing in March 2015.

Recap: 7 types of deliverables achieved: articles, IT tools, academic, trainings, screening tool, functional food, guidelines. The different deliverables from different groups will be posted on Yammer. Some of the partners will show what they have achieved and potentially will serve as an stimulus for others. Partners were reminded to proactively send their finished deliverables as soon as they have them

CCTR

Miriam Vollenbroek-Hutten (Universiteit Twente)

ICT supported services for remotely supervised monitoring and treatment of physical performance.

Before the EIP: modular services developed with clinicians such as online individual exercising, activity monitoring and feedback, frequent monitoring of symptoms and health status, communication and contact. A large clinical study was taken in rehabilitation in 4 countries and

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different health-care settings outside of rehabilitation, on different diagnosis groups (mostly in the Twente region). Clinical results appear than the quality of life effects are positive for all diagnosis group, with high acceptance and good recommendation.

Commitment progress during the EIP: • Implementing remote physical training programs in everyday clinical rehabilitation practice

[promoting physical functioning/dissemination]

• Trials were undertaken (2013), business cases developed (2014), and exercise libraries developed (2015).

• Implementing and evaluation ICT supported services for disease management in primary care [development of services/knowledge gathering]

• Living lab established to implement and evaluate new technologies

• Developing and validating self-management programmes for physical functioning to be used by older adults independently but supported when needed [promoting physical functioning/knowledge gathering]

• Half a year in — integrated ICT tool for screening (based on EIP commitments and good practices) as a paper tool initially, adapting OTAGO programme from physiotherapists to be written down in a scientific paper about connecting community services with healthcare services.

GOAL (Getting Optimize Ageing Life Quality)

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Donatella Tramontano (Federico II University)

Social isolation is extremely dramatic for the elderly, and is linked to poor nutrition, impairment in physical activities, and difficulties in relationships. Strategy: to fight social isolation is very important to fight frailty, pre-frailty, and support active and health ageing. Knowledge, awareness, sharing and caring are all important to fight social isolation.

Nutrition seen not as proper food alone, but as good food — when people eat, they have to enjoy it. 15 Mediterranean diet original recipes have been developed with a translation in English and French to be published October 31st. Two public dissemination events have occurred, and three health eating training sessions at hotel schools involving 350 students, 120 parents and 20 Alzheimer’s patients.

Physical activity is about happiness rather than just muscle strength. The sport unit of the Christian labour association in Italy has 18 gyms across Italy (USacli). 459 subjects have been enrolled (70% women) to assess performance of enrolled subjects and to identify a subset of exercises necessary for individuals. USacli has also organised 47 ‘walks for health’ in 2014 alone.

Cultural and social activities: seeding culture to harvest health through the development of an ad hoc tool in cultural and medical venues across and around Naples. 800 responses - in patients, the difference in wellbeing from cultural participation is large, indicating that culture has a strong effect on patients, especially older females. Women patients not participating in cultural activities are lower in wellbeing than women non-patients.

Centre for Gastrology

Edwig Goossens and Bjorn Geuns (Centre for Gastrology)

1. Train chefs to a high level in gastrology (a harmony between tasty, safe and healthy food) and engineering. In agricultural systems, supplements, enternal-paternal, and medication systems, everyone is trained highly — but in common food cooking processes and selective taste steering, there is only limited training.

2. Opening up nutritional data and platform to nursing and medical professions. Stakeholders involved - patient (owns own nutritional record, which is unique) and their record can be accessed in an integrated way by other stakeholders such as chefs, managers, dieticians, relatives, nurses etc. This was likes and dislikes can be assessed and involved in decisions in the patient’s life. API provides common functionality for all stakeholders — adding records, querying, editing. Behind this is secure cloud storage, and looking at Microsoft HealthVault, where one of the advantages there is the distribution element, out of the box connectivity with other apps, and a lot of hardware already available that can integrate with this platform through HealthVault. Investigating possibilities of integrating existing tools (inside AG) with this tool — seems possible and easy without extra overhead. End of December — beta tests go live, rapid scaling up from a few dozen to a few hundred/thousands. Scaling up does not take long because of investments made in keeping infrastructure costs flexible and low.

Giving visibility to A3 work

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Anna Carta (EC)

Infographic on A3 achievements (e.g. frailty definitions)‘The family book’ on development and progress of A3 during its existenceHow EIP and frailty fits into wider EU schemes and work.

Question: how to group deliverables into a more succinct form? Perhaps grouping them against the goals of the partnership: Quality of Life, Sustainability and Innovation and Growth.

Conference of the Partners December 1st — A3 has the opportunity to present work to EIP. Work needed to develop ways to best present A3 work in a 15 minute slot.

AOB

Anne Hendry noted that there is the Conference on Integrated Care being held in Edinburgh in 2015: one of the themes is tackling multi-morbidity and frailty. Abstracts are encouraged to present some of the A3 work. If there is interest, perhaps an A3 meeting could be attached to the conference.

Conclusions of the day and next steps

Jorge Pinto Antunes (EC)

Emphasis was placed on finalizing deliverables that are due for XII-2014 in order to report back on progress. It is especially important, taking into account the new College of Commissioners and Directorate-General of DG SANCO, to make a case for building on the work undertaken by A3 AG.

Common work products and individual commitments with deliverables finished by 2014 will be part of the contents of the document summarizing A3 AG work that will be presented in the CoP. There will also be a possibility to be showcased at the European Innovation Summit on Active and Healthy Ageing in March 2015. In this respect partners were reminded to send their finished deliverables as soon as they have them.

In the deliverables presented, many different experiences can be discerned. This is a challenge but also a wealth. Need a straightforward message about A) what EIP A3 group is trying to do B) how EIP is contributing to European change. Material needs to be created to showcase this. ‘Key messages’ could be a way forward — and this could be backed up with what we have already been doing.

As part of common work products a “What to read if you are interested in frailty prevention” will be developed based on the bibliography already used by the sub-groups for their common work deliverables. It will be ready for the CoP.

Partners are encouraged to think about the achievements of the last few years with regard to the communication that the Commission will prepare to take stock of the achievements of the EIP on AHA. They are invited to send in input from A3 partners to tell the Commission about the added-value of working with the Partnership.

Partners were reminded of the next main events and the need to respond to the invitation sent in order to be registered. Namely these will be: - Conference of Partners (CoP) on the 1st December (more operative)

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- The AHA Summit, 9-10 March setting direction for active and healthy ageing actions at the European level, reaching beyond the EIP (more political).

Input of members, and a more in-depth discussion on data provision, will be required at the December 1st meeting. Two commitments for each AG will be noted with have a technical and high amount of reported data, which will be chosen based on the Outcome Questionnaire. The A3 partners who work directly with the collection and analysis of data from their commitments will be invited to attend a dedicated session on the Monitoring Framework at the CoP.

JPA also noted that participants should continue to use and monitor the marketplace, which displays identified calls and funding opportunities.

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Annexes to the MinutesAnnex 1: agenda

See ppp EC

Annex 2: list of participants

Annex 3:PPP EC

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