Value Co-creation in Parkinson Networks ∗ Henderik A. 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 E.Proper@acm.org, M.Alkema@student.ru.nl, Pierre-Jean.Barlatier@list.lu 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 of value in use rather that value 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 of value in use rather that value 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 called digital service ecosystems [3]. In the (joint) ∗ This work has been partially sponsored by the Fonds National de la Recherche Luxembourg (www.fnr.lu), via the ValCoLa project. development / growth of such digital service ecosystems, infrastructural investments (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 ParkinsonNet 4 concept 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 4 https://www.parkinsonnet.nl 5 https://www.parkinsonnet.lu ANALYSIS optimal outcomes”, which entails patient participation, empowerment, and self man- bmj.com/podcasts Net has succeeded in agement, combined with the use of information technology ! Bastiaanto driveand Bloemn and support, Marko the van der Vegt re away from institutions network. Figure 1 depicts the medical disciplines, asdiscuss this analysis identified paper in [1], thatin are a podcast (poten- mmunity based care, tially) involved in healthcare for Parkinson’s disease. he patients’ homes ents of the ParkinsonNet Neurosurgeon Speech language Psychiatrist therapist Geriatrician evidence based recommendations Physiotherapists us based statements General practitioner sonnet.nl/parkinson/ Pharmacist Occupational htlijnen) therapist plinary—for physiotherapy, Patient and family rapy, occupational therapy, nd nursing home care Neurologist and Parkinson Nursing home specialist plinary—includes a consensus nurse specialist Rehabilitation specialist del for regional and transmural Sex on of multidisciplinary care and is Social worker therapist ble in a patient friendly format Expert centre Dietician f a restricted number of motivated Patient foundation Home care (Neuro-) providers psychologist erral nd physicians funnel referrals Fig 1Fig. Disciplines involvedinvolved 1. Disciplines in the care inofthe patients care ofwith Parkinson’s patients disease. Those with Parkinsons in thetaken disease, central triangle from [1] rkinsonNet experts to increase are involved consistently; other disciplines can be engaged as needed oad through use of standardised ms with referral criteria effectiveness and complications for the various positive, showing an increase in Parkinson spe- As Figure treatment options1 in also illustrates, advanced a Parkinson Parkinson’s dis- network puts the cific knowledge patient among (and theirtherapists, participating family) central, while different relevant health disciplines, administrative actors, etc, ease, allowing them to participate in making an a better adherence to the treatment guidelines, contribute aining of participants in treatment to the needed (4 days) informed decision.health care.patients In addition Healtharecare givenprofessionals and a moreare thanthen expected sevenfold on the increase cross in annual section between their discipline and Parkinson disease. the option of having consultations in their own patient volume for ParkinsonNet therapists n the job: increase experience by any patients homes through The secured video combination of a links. network, the focuscompared with control therapists on the co-creation of (health)between value2003 be- 18 role of information technology s interaction and information tween patients, family, and health professionals, andand2006. the ParkinsonNet coverage was gradu- between participants through Development to bring the and implementation parties of together, makes ally extended, the creation achieving of Parkinson nationwide networks coverage in an interesting national conference, regional guidelines case for the ValCoLa project. 2010. There are now 66 regional networks with linary meetings (at least twice Treatment guidelinesoffor The initiators thephysiotherapists were 2970 Dutch ParkinsonNet alreadytrained had professionals from a widethe the idea to generalise range con-of d participation in web based developed cept. Bothbyinaterms nationalof panel of physiothera- re-applying the model disciplines for around in other countries, 50also but 000 patients (figure). to generalise it nd regional communities pists into and neurologists a general with expertise healthcare conceptinthat treating could The largest groups be beneficial includewith to patients physiotherapists other forms t Parkinson of chronic patients, disease,and supported such by the Dutch (n=1022), occupational therapists (n=392), as Alzheimer’s. gree to work according to Parkinson Patient Foundation and the Royal speech-language therapists (n=379), dietitians guidelines Dutch Society of Physiotherapy. The guidelines (n=156), nursing home physicians (n=129), y about quality of services and are 3 based on scientific Approach evidence, and initialsupplemented results and specialised Parkinson nurses (n=76). The mes with practice based evidence generated by con- only professionals not yet part of Parkinson- 17 shed in the Parkinson Atlas (www. sensus meetingsthe In developing among experts.network(s) Parkinson Other guide- Net are case study neurosurgeons we also observe(d)andthe geriatricians; these need for value Atlas.nl) lines were then drawn up by similar national disciplines are scheduled co-creation between the research communities involved. Where the ValCoLa project to be trained later. expert panels (again supported by the patient General practitioners are not planned to be part ed approach needed a case study, the ParkinsonNetworks have a need to better understand the work- foundation and relevant professional organisa- of ParkinsonNet because they have little direct e, through use of guidelines ings of such networks, as well as make their development strategies more explicit. The tions) for speech therapists and occupational involvement in Parkinson specific management s, web based communities for ersonal digital community, and a therapists and to define best care in nursing decisions and therefore do not need to receive ntred questionnaire (PCQ-PD) homes and by nurse specialists (box). specialised training. Nevertheless, they have an important generic role in overseeing comorbidity technology platform: Implementation of regional networks and polypharmacy, and in referring patients to e website (www.ParkinsonNet.nl) The first regional network was established specialised members of the network. We there- search engine (www. in 2004 in the catchment area of the cities of fore ensure that GPs know about the existence Zorgzoeker.nl) Nijmegen and Arnhem, and initially included of ParkinsonNet and the healthcare finder, to communities for patients and 19 physiotherapists, nine occupational thera- structure the referral process. als (www.MijnParkinsonzorg.nl) pists, and nine speech-language therapists health record with decision (selected on the basis of personal motivation, Making the most of information technology Online Community Patient community Stakeholder Virtual public Community Virtual public Document Process Professional community Provides Supports Patient General practitioner Patient Family Maintains Providers National coordination Creates centre Enables Provides PD Nurse Checks Care Physical Receives specialist therapist Refers Refers Refers Initial treatmen Diagnosis Allied health Speech Treatment therapist Research professionals Provides Training Occupational Neurologist therapist 1 day 3 hour Newspaper 3 day Treatment clinic visit seminar basic course Guidelines Physiotherapy Language therapy Occupational therapy Multidisciplinary guidelines guidelines guidelines guidelines Patient Professional Health proces contribution contribution Fig. 2. Landscape of ParkinsonNet Self-care Create diagnosis Royal Dutch Society Dutch Parkinson of Physiotherapy patient foundation Providing personal Create medical information terminology Suggestions Create prescripton treatment Contributing ideas service Patient- Doctor discourse 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 the running 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 to growing the 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 to grow Parkinson- 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 its situational analysis, risk analysis (in terms of the latter), and heuristics to select / define risk miti- gation strategies and project 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” Value flows Stakeholders PNet 1 ParkinsonNet --> Health Providers 4 Health Insurance --> Health Providers Job satisfaction + Sponsoring + PD Patients + Expertise + <-- Cooperation (Unnecessary) service utilisation in + - Health Professionals healthcare Career advancement + + Efficiency healthcare possibilities 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 - Self- management + negotiations Efficiency (less waste) + Referrals + Promotion + <-- <-- + Self- management + Money - Money (when not insured) + Patients Fig. 4. 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