Building a bridge between clinical pathways

and eHealth solutions to manage

chronic diseases and social care

Angelo Rossi Mori

MIE 2011 Workshop WS2

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•  Albert ALONSO, Fundació Clínic per a la Recerca Biomèdica, Barcelona, Spain

•  Jacob HOFDIJK Integrated Payment for Chronic Diseases, Ministry of Health, The Netherlands

•  Michael RIGBY Emeritus Professor of Health Information Strategy, Keele University, United Kingdom

•  Angelo ROSSIMORI, Marta MAZZEO eHealth Unit, Institute for Biomedical Technologies, CNR, Rome, Italy (arossimori@gmail.com) 2

The background

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Improvement potential, as percent of system inefficiency [IBM 2011]

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1. new models of care

Disease Management and Chronic Care Model, with an appropriate Patient Engagement, are being introduced to face the increasing requirements of long-term care. Integration of health and social care requires: •  Integrated “vertical” roadmaps; •  Integrated governance; •  Integrated management of information.

A joint research effort across Europe could build a bridge to connect the existing Evidence-Based Clinical Pathways to a wide spectrum of eHealth functions. 5

2. ehealth solutions

Most countries and regions are entering the “Connected Health” era. The eHealth progresses may enable the introduction of dramatic changes in the organisation of health and social care. eHealth solutions could assist the move towards more sustainable care systems, to effectively transform the care provision towards the territory, supporting home care and reducing improper hospitalisations.

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3. e-gov plans

Significant achievements were made by e-government plans to accelerate the adoption of ICT and in particular of eHealth. These plans usually act on two lines: •  The national / regional infrastructures to share

clinical data and documents among care providers (e.g. the longitudinal EHR, Electronic Health Record);

•  Specific ehealth initiatives on ancillary services, e.g. on e-booking, e-prescriptions, electronic diagnostic reports, patient summaries. with a “horizontal” approach aimed at the population as a whole. 7

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4. a “vertical” focus

However, the policies on health and social care are mostly based on a “vertical” focus on specific sub-populations, with an holistic view about the individual, e.g. : •  integrated management of a long term condition, •  risk control for the frail elderly, •  support the independent living of those with disabilities, •  health promotion and supervision

of the process of the regular children growth

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policies driven by patients’ needs

•  multiple conditions, long-term activities ? •  proactive role of the citizen and the family ? •  shift from hospital to community (and home) –  shift from acute to chronic –  relevance of social issues

a dramatic change of perspective: implementing and adaptating a care plan more than the diagnostic process and the decision processes

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11 [ Taylor 2007 ]

5. synergies

Many fragmented eHealth solutions do already exist across Europe to support the needs of long-term care provision. There is still a lack of a comprehensive framework to put systematically together •  the technology-driven horizontal approach

of e-government •  the problem-driven vertical approach

of care policies

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all kinds of technologies

•  (apparently) low-tech tools, e.g. glasses and contact lenses

•  equipments, e.g. surveillance, home measurement devices

•  ICT services – personal productivity – within a facility – in the jurisdiction

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e.g. low-tech tools related to feeding

•  Universal-cuff to hold utensils •  ADL wrist splint to stabilize wrist •  Non-skid bowl •  Plate guard •  Scoop dish •  Adaptive utensils •  Long straw •  Mobile arm supports

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Management of Information, Communication and Knowledge (MICK) – a comprehensive view

health / social professional

informal actor

operator of contact centre

health / social manager

subject of care

clinical data

administrative data

home devices

procedural instructions

clinical knowledge

practical information

other services

common substrate of data, information and knowledge

social networking

individual data local/universal resources services

issues •  wellness •  healthy ageing •  chronic diseases •  independent living •  frail elderly

technologies •  information systems •  mobile devices •  home clinical devices •  domotics

actors •  the citizen •  informal caregivers •  doctors (care, self-audit) •  allied professions –  community nurses /

care managers •  call centre operators •  clinical, organizational

and administrative managers

•  policy makers 16

towards a fully integrated ecosystem - 1

care models •  chronic care model •  medical home •  disease management •  patient empowerment •  predictive,

participative, preventive, personalized medicine

integration •  hospital and community

care •  social and health care •  formal and informal care •  vertical and horizontal

eHealth roadmaps •  care provision and

governance / policies 17

towards a fully integrated ecosystem - 2

The workshop

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the challenge

•  new models of care are being introduced (Disease Management, Chronic Care Model) to face the increasing requirements of long term care.

•  shift towards social care •  proactive role of the citizens

(Patient Engagement) •  close coordination of all the actors

as an ad hoc, “virtual” care team 19

goal of the workshop

•  To add a “vertical” perspective to the current eHealth Roadmaps, to deploy and monitor effective eHealth initiatives embedded into the policies on health and social care.

•  The initial focus could be on chronic diseases, long-term care and ageing well, i.e. a relevant health problem for citizens and the most resource-consuming sector in health and social care.

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schedule of the workshop

•  Rigby – Introduction to holistic health, social care informatics (10’)

•  Rossimori, Mazzeo – Background concepts (20’) •  3 short presentations (10’ each) – Rossimori: Integrated vertical roadmaps – Hofdijk: Integrated governance – Alonso: Integrated management of information

•  Rigby – guided discussion and conclusions (30’)

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1. Rossimori – Integrated vertical roadmaps

•  formalize actors, objectives, roles, tasks, interaction points and information needs in the clinical pathways

•  as the context for the clinical, organizational, managerial, educational, administrative, practical eHealth functions

•  to produce the “vertical” components of the eHealth roadmaps compatible with health and social policies, funding models, demographic changes and needs for care

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2. Hofdijk – Integrated governance

•  Integrated care asks for indicators on quality and appropriateness, and for specific economic agreements between payers and providers

•  Most eHealth initiatives focus on data and infrastructures, but a systemic sharing of data requires a proper regulatory/economic context, or the individual providers have no stimulus to collaborate or to engage the citizens.

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3. Alonso: Integrated management of information

The “engaged” patients and their informal carers, supported by a new generation of home devices and telemedicine services, should manage most routine care at home or in long-term facilities, and the related information, in an integrated way.

Proactive citizens and their related professionals make up a particular “functional care team”, an ad hoc “virtual facility” different for each patient, because it depends on the (multiple) health issues and the social situation within the specific ecosystem of that patient.

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Integrated vertical roadmaps

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issue - need to stratify recipients and caregivers

•  extending the “Kaiser pyramid” (for chronic conditions) to elderly, frail people, social care

•  different phenomena for different stages of the chronic condition (diabetes, obesity, dementia)

•  support to caregivers ?

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27 [ Taylor 2007 ]

intrinsic difficulty to measure a context-dependent adaptation

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area of intervention: self, carers, technologies

ideal functional level

impaired function

“age”, disease, accident

partial functional recovery, satisfactory for adaptation to work or social life of a particular individual

WP4 of the ANCIEN Project

•  to set up a framework to foresee the impact of technologies on the LTC milieu

•  to apply it to 3 case studies, respectively: dementia, diabetes and obesity

•  to envisage the qualitative effects on the distribution of activities among formal and informal carers

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ANCIEN: building qualitative scenarios

•  organizational models to be adopted •  regulatory changes, “aware” of the technologies,

likely to intervene in the medium-long term •  role of the family as consumers

(buying complementary services and devices, provided by public system or insurances),

•  impact of the innovative care models (assisted by the technologies) on labour productivity and costs in LTC.

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ANCIEN: the case studies

•  identify the possible stages for each case study 1. prevention / onset, 2. stable phase, 3. complex consequences

•  impact on the autonomy of the recipient, on the need of professional activities, on the distribution between residential and home care, and on the burden of care helpers

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ISSUE% TOPIC% TOOL% ACTOR%

pain%rest% medications,%electric%profiling%bed,%electric%height4

adjustable%couch,%pressure%reduction%mattresses% GP%(to%prescribe)%nocturne%

walking% aids%and%appliances%as%walking%stick%or%walking%aid%

ADL%

elimination% bedside%commode%chair,%bedpans,%bedbaths%

nurse,%care%giver%(to%make)%

dressing%underdressing%shoes% special%shoes%and%clothes%personal%hygiene%and%grooming% mobile%bariatric%shower,%commode%chair%functional%transfers%(bed↔chair)%

sliding%sheet,%mobile%sling%lifter,%bariatric%slings,%bariatrc%wheelchair%%

ambulation% walking%aid,%walker%with%castors%

IADL%shopping%for%groceries,%clothing,%medications% e4commerce,%care%giver%

care%giver,%social%services%mobility%/%transport% coordination%services%

health%mainte4nance%

taking%medications% eletronic%diary,%dispenser%

specialist,%self%nutrition/diet% food%journal,%sensors%in%the%fridge%self4monitoring% contacalorie%remote%monitoring% weight,%pression,%blood%glucose%

education%remote%training% portals,%community,%% contact%

centre%(counselling)%supervision%technology% portals,%community%

preven4tion%%

follow4up%nutrition% ICT%application%for%communication%and%reminders%GP%follow4up%related%pathologies%% ICT%application%for%communication%and%reminders%

follow4up%psychological%state%% ICT%application%for%communication%and%reminders%safety% home%enviroment% alert%systems,%sensory% ?%leisure% communication% telephone,%pc,%tv% self%physical%activity%

rehabilitation% tele4therapy,%wii% therapist,%self%trainer%% tele4therapy,%wii%

© ANCIEN 2011

potential impact of technologies, 1

33 © ANCIEN 2011

34 © ANCIEN 2011

potential impact, 2

Discussion

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The specific role of ICT

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predict the information needs

Ideally a "contract" should clarify the role, the goal and the activities by each professional and by the patient, to "enroll" them into an explicit (stable) personalized plan of care for a suitable period. The Clinical Pathways allow to predict information needs and interactions among all the actors: which data should be available to whom, when, where, captured by whom, to address the co-operability – ability to cooperate among actors – in addition to the inter-operability among systems.

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work out the ICT needs

The clinical pathways allow to define the potential eHealth functions and to work out the detailed requirements for structured information: •  the appropriate clinical data

to be captured and exchanged, •  the level of coding actually needed

for further processing, •  the timely indicators

for governance and other secondary uses

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genuine and artificial PHRs

Personal Helath Record systems of providers with a high organizational cohesion (e.g. Kaiser, Veterans, Maccabi) are build on high-quality, care-related integrated information systems.

Several other PHRs are artifacts that do not correspond to an integrated care ecosystem; the citizen seems not to be able or willing to "unify" in that PHR his/her disparate care experiences.

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Supporting health and social care

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Comprehensive solutions will involve a broad ecosystem of participants, including payers, healthcare providers, governments and NGOs. [IBM - The future of connected health devices, 2011]

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[Lamura et al. IPTS study on ICT and migrants in LTC, 2011]

types of care helpers

The role of the technologies

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the direct impact

LTC-related technology should support daily life activities and enrich resident quality of life, addressing – safety (e.g., falls, wandering), – self-care activities (e.g., bathing, taking

medication, eating, mobility, sleeping), – communication

(e.g., social interaction and connection), – entertainment (e.g., recreation, leisure).

[Tak 2010] 44

the mechanisms

•  adaptation / reduction of the effects of the existing impairments

•  prevent, delay or reduce the impairments as effects of diseases / complications

•  prevent risks of accidents; timely interventions afterwards (e.g. emergency button)

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potentialities

•  partially restored abilities •  more authonomy, less dependency •  more people able to remain at home •  less burden for care helpers •  less need for care helpers for the same people

(but increasing number of people with needs) •  less workload for formal carers

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systemic effect

•  several isolated tools, equipments, ICT solutions (e.g. directly acquired by the consumer or provided by the care providers) cannot change the context

•  innovative organizational models are required to face sustainability and equity e.g. chronic disease management, chronic care model

•  according to new rules of the game (regulations, incentives)

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technology as enabler or facilitator

•  a systemic, pervasive effect, managed / provoked by authorities, payers, care organizations

•  need to shift attention from technology (tool) to organization

•  new professions (care manager, a nurse) •  new forms of payment

(e.g. Accountable Care Organizatons in US) which provoke an aggregation of care providers 48

technology as catalyser ?

•  the (systemic) technologies aren’t the main driver of change, but just a factor or maybe a catalyser

•  they offer in fact the opportunities to enable, amplify or support relevant organizational changes

•  perhaps endorsed and made possible by new approaches to regulations

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order of magnitude of the cumulated effects

we could perhaps figure out the order of magnitude of the cumulated effects – when new regulations will be in place – how fast the organisational change

will take place – amount of the effect / impact

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obesity – the Bariatric Gallery [Arjo 2011]

CARL • Sits in wheelchair • Is able to partially bear weight

on at least one leg • Has some trunk stability • Dependent on carer in most

situations • Very physically demanding for carer • Stimulation of remaining abilities

is very important DORIS • Sits in wheelchair • No capacity to support herself • Cannot stand unsupported and

unable to bear weight, even partially

• Dependent on carer in most situations

• Extremely physically demanding for carer

• Stimulation of remaining abilities is very important

EMMA • Passive • Might be almost completely

bedridden • Often stiff, contracted joints • Totally dependent • Extremely physically demanding

for carer • Stimulation and activation

is not a primary goal 51