Value Co-creation in Parkinson Networks
∗HenderikA. Proper1,2, Michael P. T. Alkema3, and Pierre-Jean Barlatier1
1 Luxembourg Institute of Science and Technology (LIST), Belval, Luxembourg
2 University of Luxembourg, Luxembourg
3 Radboud University Nijmegen, Nijmegen, the Netherlands [email protected], [email protected],
Abstract. Marketing sciences suggests that, with the maturation of the (digi- tal) service economy, the notion of economic exchange, core to the economy, has shifted from following a goods-dominant logic to now following a service- dominant logic.
Key to service dominance is the notion ofvalue in userather thatvalue in ex- change. Value is seen as being created in a process of co creation, involving re- source integration.
To design, and evaluate, different design options for value co-creation scenarios, a modelling framework is needed to capture such scenarios. The development of this framework is driven by different case studies. This paper is concerned with early results concerning one such case study in value co-creation, in terms of the ParkinsonNet concept for improved healthcare for Parkinson patients (and their family) as pioneered in the Netherlands.
Keywords:Value co-creation, Service Economy, ParkinsonNet
1 Introduction
Western countries have seen a transition from a goods-oriented economy to a services- oriented economy. Most, if not all, services delivered in the service economy are ac- tually digital services in the sense that they are obtained and / or arranged through a digital transaction over information networks [16, 12]. As such, IT is also generally seen as being the key enabler of the (digital) service economy [11].
Marketing sciences [14, 4, 13] suggests that, with the maturation of the (digital) service economy, the notion of economic exchange, core to the economy, has shifted from following a goods-dominant logic to now following a service-dominant logic. Key to service dominance is the notion ofvalue in userather thatvalue in exchange. Value is seen as being created in a process of co creation, involving resource integration, also further blurring the distinction between consumers and producers.
Combined with the digital transformation, the shift towards service dominance, re- sults in the creation of what might be calleddigital service ecosystems[3]. In the (joint)
∗This work has been partially sponsored by theFonds National de la Recherche Luxembourg (www.fnr.lu), via the ValCoLa project.
development / growth of such digital service ecosystems, infrastructuralinvestments (in people, infrastructures, processes, etc) need to be made by the participants in order to prepare themselves for the actual co-creation of value. Such infrastructural invest- ments could e.g. include cultural / knowledge assets, as well as “institutions” in terms of rules, norms, meanings, symbols, practices, and similar aides to collaboration [13], social / contractual assets in terms of defined institutional arrangements [13], contracts with partners in the value web, etc, as well as technological assets such as shared tech- nology platforms, etc.
To ensure that such investments remain controllable, to manage coherence [15], to ascertain if key quality concerns (e.g. sustainability, security, privacy, flexibility) are met, etc., one generally suggests to use an design / architecture oriented approach [6, 9].
Such approaches typically involve modelling frameworks covering different aspects / perspectives of the enterprise / digital service ecosystems, while also maintaining co- herence between these aspects / perspectives. Examples include ARIS [10] and Archi- Mate [5].
As argued in [8], for value co-creation, it is important to take a holistic perspective of the digital service ecosystems and its context. Concerns, such as sustainability, equity between partners, etc, can only be considered sensibly at the level of the ecosystem as a whole. During last year’s VMBO, we reported on work done, in the context of the ValCoLa project, towards the development of a modelling framework language for value co-creation [8], in particular the strategy we aim to follow in the development of such a framework. One of the key messages was the need to use case studies in the development of such a modelling framework. Contrary to e.g. the development of ArchiMate [5], there is not (yet) a rich experience in the design of value co-creation driven digital service ecosystems.
In line with this, the remainder of this paper is concerned with early results concern- ing one such case study in value co-creation, in terms of the ParkinsonNet4concept for improved healthcare for Parkinson patients (and their family) as pioneered in the Netherlands.
2 Background
Parkinson’s disease is a common and disabling neurodegenerative disorder [1]. To im- prove the quality of care, while at the same time reduced costs, for healthcare for patients (and their families) suffering with Parkinsons disease, Dutch researchers in the Parkinson’s domain have pioneered the concept of Parkinson networks. The Dutch ParkinsonNet has indeed been able to achieve these goals [1], triggering other countries to try and copy the same model, such as Luxembourg.5
The concept of a ParkinsonNetwork has introduced a new way of care, where “spe- cialised professionals and engaged patients work together to try to achieve optimal outcomes” [1]. Key in this is that it introduces a “new “collaborative culture of care”
where specialised professionals and engaged patients work together to try to achieve
4https://www.parkinsonnet.nl
5https://www.parkinsonnet.lu
optimal outcomes”, which entails patient participation, empowerment, and self man- agement, combined with the use of information technology to drive and support, the network. Figure 1 depicts the medical disciplines, as identified in [1], that are (poten- tially) involved in healthcare for Parkinson’s disease.
BMJ | 22 MARCH 2014 | VOLUME 348 21
ANALYSIS
effectiveness and complications for the various treatment options in advanced Parkinson’s dis- ease, allowing them to participate in making an informed decision. In addition patients are given the option of having consultations in their own homes through secured video links.
Development and implementation of guidelines
Treatment guidelines for physiotherapists were developed by a national panel of physiothera- pists and neurologists with expertise in treating Parkinson patients, and supported by the Dutch Parkinson Patient Foundation and the Royal Dutch Society of Physiotherapy. The guidelines are based on scientific evidence, supplemented with practice based evidence generated by con- sensus meetings among experts.17 Other guide- lines were then drawn up by similar national expert panels (again supported by the patient foundation and relevant professional organisa- tions) for speech therapists and occupational therapists and to define best care in nursing homes and by nurse specialists (box).
Implementation of regional networks
The first regional network was established in 2004 in the catchment area of the cities of Nijmegen and Arnhem, and initially included 19 physiotherapists, nine occupational thera- pists, and nine speech-language therapists (selected on the basis of personal motivation, previous expertise, and location out of a total of 5297 allied health professionals working in this area).17 The experience with this network was
positive, showing an increase in Parkinson spe- cific knowledge among participating therapists, a better adherence to the treatment guidelines, and a more than sevenfold increase in annual patient volume for ParkinsonNet therapists compared with control therapists between 2003 and 2006.18 ParkinsonNet coverage was gradu- ally extended, achieving nationwide coverage in 2010. There are now 66 regional networks with 2970 trained professionals from a wide range of disciplines for around 50 000 patients (figure).
The largest groups include physiotherapists (n=1022), occupational therapists (n=392), speech-language therapists (n=379), dietitians (n=156), nursing home physicians (n=129), and specialised Parkinson nurses (n=76). The only professionals not yet part of Parkinson- Net are neurosurgeons and geriatricians; these disciplines are scheduled to be trained later.
General practitioners are not planned to be part of ParkinsonNet because they have little direct involvement in Parkinson specific management decisions and therefore do not need to receive specialised training. Nevertheless, they have an important generic role in overseeing comorbidity and polypharmacy, and in referring patients to specialised members of the network. We there- fore ensure that GPs know about the existence of ParkinsonNet and the healthcare finder, to structure the referral process.
Making the most of information technology One of the key aims of ParkinsonNet has been to promote transparency about the quality of care provided to patients and for this to be made
Patient and family General practitioner
Psychiatrist Speech language therapist
Occupational therapist
therapistSex
Dietician (Neuro-)
psychologist Patient foundation
Home care Expert centre
Social worker Pharmacist
Geriatrician
Neurosurgeon
Nursing home specialist Rehabilitation specialist Neurologist and Parkinson
nurse specialist
Physiotherapists
Fig 1 Disciplines involved in the care of patients with Parkinson’s disease. Those in the central triangle are involved consistently; other disciplines can be engaged as needed
Key components of the ParkinsonNet approach
Guidelines: evidence based recommendations and consensus based statements
(www.parkinsonnet.nl/parkinson/
behandelrichtlijnen)
• Monodisciplinary—for physiotherapy, speech therapy, occupational therapy, nutrition, and nursing home care
• Multidisciplinary—includes a consensus based model for regional and transmural organisation of multidisciplinary care and is also available in a patient friendly format Selection
• Inclusion of a restricted number of motivated healthcare providers
Preferred referral
• Patients and physicians funnel referrals towards ParkinsonNet experts to increase their caseload through use of standardised referral forms with referral criteria
Education
• Baseline training of participants in treatment guidelines (4 days)
• Learning on the job: increase experience by treating many patients
• Continuous interaction and information exchange between participants through an annual national conference, regional interdisciplinary meetings (at least twice a year), and participation in web based national and regional communities Commitment
• Members agree to work according to treatment guidelines
Transparency about quality of services and health outcomes
• Data published in the Parkinson Atlas (www.
ParkinsonAtlas.nl) Patient centred approach
• For example, through use of guidelines for patients, web based communities for patients, personal digital community, and a patient centred questionnaire (PCQ-PD) Information technology platform:
• Informative website (www.ParkinsonNet.nl)
• Healthcare search engine (www.
ParkinsonZorgzoeker.nl)
• Web based communities for patients and professionals (www.MijnParkinsonzorg.nl)
• Electronic health record with decision support
• Telehealth solutions, including video consultations in a safe environment
ParkinsonNet has succeeded in shifting care away from institutions towards community based care, mainly in the patients’ homes
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Fig. 1.Disciplines involved in the care of patients with Parkinsons disease, taken from [1]
As Figure 1 also illustrates, a Parkinson network puts the patient (and their family) central, while different relevant health disciplines, administrative actors, etc, contribute to the needed health care. Health care professionals are then expected on the cross section between their discipline and Parkinson disease.
The combination of a network, the focus on the co-creation of (health) value be- tween patients, family, and health professionals, and the role of information technology to bring the parties together, makes the creation of Parkinson networks an interesting case for the ValCoLa project.
The initiators of the Dutch ParkinsonNet already had the idea to generalise the con- cept. Both in terms of re-applying the model in other countries, but also to generalise it into a general healthcare concept that could be beneficial to patients with other forms of chronic disease, such as Alzheimer’s.
3 Approach and initial results
In developing the Parkinson network(s) case study we also observe(d) the need for value co-creation between the research communities involved. Where the ValCoLa project needed a case study, the ParkinsonNetworks have a need to better understand the work- ings of such networks, as well as make their development strategies more explicit. The
Patient Receives
Online Community 3 day basic course3 hour seminar1 day clinic visit
SupportsFamily Training Self-care Providing personalinformation Suggestionstreatment Contributingideas service
Create diagnosis Create medicalterminology Create prescripton Patient- Doctor discourse
Creates EnablesChecks
Maintains National coordinationcentre Dutch Parkinsonpatient foundationRoyal Dutch Societyof Physiotherapy
Research Health proces
General practitionerProvides Provides Provides RefersRefersRefers Initial treatmenDiagnosis Neurologist Care Treatment PD Nursespecialist Allied healthprofessionalsSpeechtherapist OccupationaltherapistPhysicaltherapist
Providers
Patient
Stakeholder Process Treatment
Virtual public Newspaper
Community PatientcontributionProfessionalcontribution
Document PhysiotherapyguidelinesLanguage therapyguidelinesOccupational therapyguidelinesMultidisciplinaryguidelines
Guidelines
Virtual public
Patientcommunity Professionalcommunity
Fig. 2.Landscape of ParkinsonNet
initiators of ParkonsonNetworks have a need to use such insights and / or capitalise on their own experiences.
Condering the broadness of the stakeholders involved in the “running” and “grow- ing”, of a ParkinsonNet, it is key to take a value co-creation perspective, thus ensuring that the goals of all relevant stakeholders are met sustainably. This resulted in the strat- egy to:
1. At a generic level identify:
– generic stakeholder types for ParkinsonNetworks, – generic potential value flows between the stakeholders, – any generic “rules of the game”.
2. At the more specific level (of a specific network) identify / specialise:
– specific stakeholder types for ParkinsonNetworks, – specific potential value flows between the stakeholders, – specific “rules of the game”?
3. Articulate growth strategies:
– How to grow a sustainable ParkinsonNetwork?
– Are there different stages?
– Different roles of stakeholders during different stages?
– Is it possible to make changes to the rules of the game?
An example, of a “rule of the game”, and how this may differ between countries, is the fact that in the Netherlands, health insurance companies provide a better coverage of the costs, when patients use a health professional from the ParkinsonsNetwork. Based on experiences within the network, there is evidence that the overall costs of Parkin- son disease related health care is lower when patients receive care via the network [1].
This enables to insurance companies to let patients essential “share” in these financial benefits, making it more attractive for patients to seek health care from the network. In Luxembourg, however, such differentiation of refund of medical costs is not allowed due to the “free choice” principle, which allows patients to freely choose which (rele- vant) health care professional should treat them.
From the perspective of the ValCoLa research project, answering the above ques- tions also provide(s/d) insights into the modelling concepts needed in a modelling framework for value co-creation.
For the identification of stakeholders, Figure 1, as provided in [1], served as one of the inputs. However, additional stakeholders are involved as well, for example, in- surance companies, government agencies, funding agencies, etc. Figure 2 provides an overview of the resulting landscape of potential stakeholders. The role (or even pres- ence) of these stakeholders may differ from country to country.
In identifying the typical stakeholders and their goals, we soon realised that there where goals (and even stakeholders) that pertain to therunning activities of the net- work (e.g. patients needing care, health care professionals looking job satisfaction by being more effective in providing healthcare, etc) and those that pertain togrowingthe network (e.g. insurance companies, governments, health care organisations, etc).
The overview of the relevant stakeholders, at a generic level, is shown in Figure 3.
For each of the arrows shown in Figure 3, a further analysis was made (at the generic
Parkinson network
Fig. 3.Main stakeholders involved in a Parkinson network
level) regarding the potential value flows between the involved actors. An overview of this analysis is provided in Figure 4.
The inclusion of re-usable, value co-creation driven, strategies togrowParkinson- Networks results in a need to have a framework to “codify” such strategies. To this end, we will use the underlying structures as used in the ISPL (Information Services Procurement Library) [2, 7] as a starting point. In particular, in terms of itssituational analysis,risk analysis(in terms of the latter), andheuristicsto select / definerisk miti- gationstrategies andproject delivery strategies.
4 Conclusion and next steps
In this paper, we discussed the early results of an ongoing value co-creation case study,vin terms of the ParkinsonNet concept for improved healthcare for Parkinson patients (and their family) as pioneered in the Netherlands.
We are now in the process of (1) better documenting the potential stakeholders and their potential value exchanges (based on a literature study on papers dealing with the development of Parkinson networks), (2) more broadly validating these with the domain experts, (3) making the “reasoning structure” used in ISPL [2, 7] suitable to capture different growth strategies for ParkinsonNetworks, in particular by adding the role of value co-creation between stakeholders, and (4) capturing (and comparing) suc-
cessful / failed strategies in growing ParkinsonNetworks explicit in terms of the former
“reasoning structure”
1 ParkinsonNet --> Health Providers 4 Health Insurance --> Health Providers
Job satisfaction + Sponsoring +
PD Patients +
Expertise + <--
Cooperation
Health Professionals + - (Unnecessary) service utilisation in
healthcare Career advancement
possibilities + + Efficiency healthcare
Money + + Aid in patients
<--
+ Money
+ Work efficiency
2 ParkinsonNet --> Patient and Family 5 Patient and Family --> Health Insurance
Costs - Insurance claims -
Transparency + Money -
Community +
Travel time + <--
Intimacy + - Money
<--
+ Community participation + Feedback
3 ParkinsonNet --> Health Insurance 6 Health Providers --> Patient and Family
Costs - Quality of care +
Reimbursement
negotiations - Self- management +
Efficiency (less waste) + Referrals +
Promotion +
<--
<-- + Self- management
+ Money - Money (when not insured)
+ Patients
Value flows Stakeholders PNet
Fig. 4.Potential flow of value between the main stakeholders involved in a Parkinson network
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