COPIED studie

Een onderzoek naar cognitieve obstakels en omwegen bij de ziekte van Parkinson

Update 1: De subsidie

26 juni 2020


Onderzoek doen naar omwegen bij cognitieve obstakels

Subsidie toegekend, aanvraag gedeeld

Ruim een jaar geleden, formuleerde ik een persoonlijke missie:

Als ik iets tot mijn persoonlijke missie heb gemaakt, is het wel dat ik omweggetjes bij neuropsychologische symptomen wil verzamelen en aansluitend ook hoop om te toveren tot concrete hulpmiddelen voor patiënten en hun naasten. Mentale freezing is diffuser, minder concreet, minder bespreekbaar, minder onderzocht, minder zichtbaar en ook simpelweg minder sexy dan motorische freezing. Dat is onterecht, want de impact van mentale freezing op de levenskwaliteit is enorm. Je kunt er tenslotte van verdwijnen als mens | Marina Noordegraaf, 29 mei 2019, in een blog over depressie en parkinson  

Afgelopen maandag – op 22 juni 2020 – kregen mijn medeaanvragers Edwin Barentsen, Ingrid Sturkenboom, Esther Steultjens en ikzelf het goede nieuws. De Parkinson Vereniging heeft besloten onze subsidieaanvraag te honoreren! Ik beschouw het als een grote eer dat ons project een van de gelukkigen is. Het vertrouwen dat ons is geschonken en de verantwoordelijkheden die daarbij horen, neem ik met plechtigheid op me.

De aanvraag in een alinea

In een alinea zou ik onze aanvraag als volgt samenvatten:

Een aanzienlijk deel van mensen met parkinson heeft last van obstakels in het cognitief functioneren, vaak al voor de diagnose. Denk daarbij aan problemen met aandacht en concentratie, geheugen, snelheid van denken en handelen, overzicht houden en planning, prikkelverwerking en het uitvoeren van (dubbel)taken. In ons onderzoek, willen wij de collectieve wijsheid van mensen met parkinson en hun partners in het omzeilen van dit soort cognitieve obstakels zichtbaar maken en benutten. Dat doen we door de gebruikte strategieën op te halen, te ordenen en vervolgens weer uit te delen in de vorm van een praktische zelfhulptool.

Ons onderzoek en open science

Wetenschap gaat niet alleen over wat je onderzoekt, maar ook over hoe je onderzoekt. Dan doel ik niet alleen op de onderzoeksmethoden, maar ook op de mate van openheid die je betracht in het communiceren over het onderzoeksproces en de onderzoeksresultaten. Zoals trouwe lezers van dit blog weten, ben ik een groot voorstander van open science. Ik ben van plan dit onderzoek zo open mogelijk te maken en daar hoort – om te beginnen – het open delen van de onderzoeksaanvraag bij. (Als je naar beneden scrollt, verschijnt de gehele aanvraag vanzelf).

Voorbeelden van open science. Klik op de illustratie voor de (vergrote) PDF-versie.

Ik verwacht tijdens dit onderzoek niet alleen veel te leren over het omzeilen van cognitieve obstakels, maar ook over open science. Nu al ervaar ik een mismatch tussen het huidige systeem van subsidieaanvragen en open science. Het krijgen van een subsidie is namelijk een zeer competitieve business en dat past eigenlijk niet erg goed. Open science gaat namelijk over de meerwaarde van delen en samenwerken, van het bewust zoeken naar kruisbestuivingen, van het uitgaan van vertrouwen, in plaats van het opzoeken van de concurrentie en het meegaan in de angst dat iemand er wel eens met je idee vandoor zou kunnen gaan. Maar voor je het weet, ding je zelf mee naar de prijs … net als ikzelf … en behoor je tot de gelukkigen  …

Echter, ik weet maar al te goed welke geweldige voorstellen de eindstreep niet hebben gehaald. En dat laat me absoluut niet koud. Waarom zij niet en wij wel? Er gaat ontzettend veel waardevolle onderzoekstijd en -geld verloren in het schrijven van aanvragen die nooit gerealiseerd zullen worden. Je zou denken dat dit nu eenmaal niet anders kan omdat er maar een bepaalde hoeveelheid geld te verdelen is. Maar dat is niet perse waar. Onderzoek toont aan dat een meer gelijkmatige verdeling van onderzoeksgeld over alle stakeholders mogelijk is en grote voordelen kan opleveren (Vaessen, 2017).

Gelukkig delen steeds meer onderzoekers openlijk hun subsidievoorstellen, ook degenen die niet gehonoreerd zijn. Dat heeft uiteenlopende voordelen  zoals:

  • Het potentieel voor interactie en samenwerking neemt toe en daarmee het innovatiepotentieel;
  • Het wordt makkelijker om op afgewezen voorstellen voort te bouwen;
  • De beweringen uit diverse onderzoeksvoorstellen kunnen met behulp van data mining geanalyseerd worden wat op zichzelf nieuwe waardevolle informatie oplevert.

Idealiter had ik het onderzoeksvoorstel nog eerder gedeeld dan nu. Op kleinere schaal is dat wel gebeurd en de voordelen waren evident. Zo kijkt er bij ons een klankboordgroep mee en sommige leden van diezelfde groep dienden hun eigen project in bij de Parkinson Vereniging. Een van hen, dr. Annelien Duits, merkte op dat haar voorstel overlap had met dat van ons en zodoende hebben we naar elkaar verwezen. Hadden we in een nog eerder stadium van elkaars plannen geweten dan hadden we wellicht nog gezamenlijker op kunnen trekken. Co-creatie is nu eenmaal makkelijker als je weet waar anderen mee bezig zijn.

There is room for more transparency in the process of grant review, which would strengthen the case for the efficiency of public spending on research ….. Once a good number of proposals are open, lots of other changes towards openness would follow across the entire research system  | Mietchen, 2014

De aanvraag in haar geheel

En hier is ze dan, voor de liefhebber: de aanvraag in haar geheel (Als je op de link klikt, opent de PDF. Het enige verschil met de originele aanvraag is dat er contactgegevens uit gehaald zijn. Spam krijgt iedereen al genoeg ;)).

Heb je nu al input, ideeën, wensen? Laat het weten!
Verder spreekt de toevoeging ‘Update 1’ in de titel van deze blogpost voor zich:

Reken er maar op dat ik je op de hoogte houd.

Marina

Bronnen

Mietchen, D. (2014). The Transformative Nature of Transparency in Research Funding. PLoS Biol 12(12): e1002027. https://doi.org/10.1371/journal.pbio.1002027 (Open Access)

Vaesen, K., & Katzav, J. (2017). How much would each researcher receive if competitive government research funding were distributed equally among researchers?. PloS one, 12(9), e0183967. https://doi.org/10.1371/journal.pone.0183967 (Open Access)

Update 1: De subsidie

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