Krusenberg 2017 report

Krusenberg​ ​2017 Lean​ ​Advocacy

24th-​ ​26th​ ​November​ ​2017 Uppsala,​ ​Sweden

Report Last​ ​weekend,​ ​30​ ​Melanoma​ ​patient​ ​advocates​ ​from​ ​12​ ​countries​ ​gathered​ ​for​ ​the 4th​ ​edition​ ​of​ ​the​ ​annual​ ​MPNEhubs​ ​workshop​ ​in​ ​Krusenberg​ ​Herrgård,​ ​Sweden.

Lean​ ​Advocacy This​ ​year’s​ ​topic​ ​was​ ​‘Lean​ ​Advocacy’​ ​with​ ​an introduction​ ​to​ ​Lean​ ​Start-up​ ​principles​ ​by Andrew​ ​Evans​ ​and​ ​Otto​ ​Frijser​ ​(see​ ​below), both​ ​experienced​ ​Lean​ ​Start-up​ ​trainers​ ​from the​ ​Netherlands.​ ​Advocates​ ​evaluated whether​ ​these​ ​principles​ ​could​ ​also​ ​be applied​ ​to​ ​Melanoma​ ​patient​ ​advocacy​ ​and tested​ ​a​ ​series​ ​of​ ​tools-​ ​like​ ​the​ ​Mission Model​ ​Canvas,​ ​the​ ​Javelin​ ​board​ ​and​ ​the Patient​ ​Journey​ ​Map-​ ​on​ ​real-world​ ​problems of​ ​the​ ​Melanoma​ ​community.​ ​Projects propositions​ ​included​ ​Education​ ​for​ ​Melanoma​ ​patients,​ ​Side​ ​effect​ ​management, Data-sharing​ ​platforms,​ ​Best​ ​care​ ​pathways,​ ​Coping​ ​with​ ​Melanoma,​ ​a​ ​Clinical​ ​trials rating​ ​tool,​ ​Melanoma​ ​research​ ​agenda​ ​setting​ ​and​ ​how​ ​to​ ​identify​ ​reliable information​ ​on​ ​the​ ​internet.

Similarities​ ​and​ ​differences While​ ​start-up​ ​enterprises​ ​and​ ​patient advocacy​ ​groups​ ​share​ ​certain​ ​propertiesthe​ ​urgency,​ ​a​ ​desire​ ​for​ ​speed​ ​and​ ​limited resources-​ ​advocates​ ​also​ ​identified​ ​distinct differences,​ ​most​ ​notably​ ​in​ ​the​ ​target audience​ ​but​ ​also​ ​about​ ​available​ ​resources and​ ​constraints​ ​that​ ​are​ ​specific​ ​to​ ​patient advocacy.

Krusenberg​ ​2017​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​LEAN​ ​ADVOCACY​ ​workshop​ ​for​ ​MPNEhubs​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​1

Conclusion​ ​and​ ​next​ ​steps The​ ​spontaneous​ ​feed-back​ ​was​ ​extremely​ ​positive​ ​and​ ​MPNEhubs​ ​concluded​ ​that Lean​ ​Start-up​ ​tools​ ​were​ ​valuable​ ​to​ ​their​ ​advocacy​ ​work.​ ​The​ ​Sunday​ ​morning​ ​was then​ ​spent​ ​on​ ​discussions​ ​on​ ​how​ ​to​ ​now​ ​adapt,​ ​continue​ ​and​ ​expand​ ​these​ ​Lean Start-up​ ​tools​ ​as​ ​‘Lean​ ​Advocacy’​ ​concept​ ​for​ ​the​ ​wider​ ​European​ ​Melanoma advocacy​ ​community.​ ​Under​ ​consideration​ ​are​ ​now​ ​a​ ​MOOC​ ​(Massive​ ​Open​ ​Online Course)​ ​for​ ​Lean​ ​Advocacy​ ​tools,​ ​webinars​ ​with​ ​Andrew​ ​and​ ​Otto​ ​for​ ​further follow-up​ ​and​ ​to​ ​provide​ ​guidance​ ​for​ ​advocates​ ​using​ ​these​ ​tools​ ​for​ ​their​ ​own work​ ​and​ ​continued​ ​workshops​ ​at​ ​MPNE​ ​events​ ​to​ ​reach​ ​a​ ​wider​ ​audience.

Overall,​ ​an​ ​extremely​ ​productive​ ​weekend​ ​and​ ​we​ ​thank​ ​everyone​ ​for​ ​their enthusiasm,​ ​participation​ ​and​ ​hard​ ​work!

Faculty Andrew​ ​Evans​​ ​was​ ​diagnosed​ ​with​ ​choroidal​ ​melanoma​ ​in​ ​May​ ​of​ ​2013.

Andrew​ ​brings​ ​a​ ​decade​ ​of​ ​Agile​ ​experience​ ​from​ ​consulting-​ ​as​ ​both​ ​a​ ​hands-on project​ ​lead​ ​and​ ​as​ ​a​ ​trainer​ ​in​ ​Agile​ ​processes​ ​for​ ​large​ ​corporates​ ​as​ ​well​ ​as highly-regarded​ ​digital​ ​business​ ​programs​ ​through​ ​Hyper​ ​Island​ ​and​ ​The​ ​Talent Institute.​ ​He​ ​has​ ​also​ ​served​ ​as​ ​a​ ​mentor​ ​and​ ​organizer​ ​for​ ​Lean​ ​Startup​ ​Machine​ ​a​ ​global​ ​3-day​ ​bootcamp​ ​program​ ​that​ ​takes​ ​startups​ ​from​ ​ideas​ ​to​ ​customers.

Since​ ​his​ ​own​ ​diagnosis,​ ​Andrew​ ​has​ ​striven​ ​to​ ​help​ ​other​ ​patients​ ​make​ ​sense​ ​of the​ ​complexities​ ​of​ ​their​ ​diagnoses,​ ​through​ ​active​ ​participation​ ​on​ ​social​ ​media​ ​and by​ ​writing​ ​a​ ​blog​ ​that​ ​attempts​ ​to​ ​explain​ ​cancer​ ​concepts​ ​in​ ​accessible​ ​terms.​ ​ ​He moved​ ​to​ ​The​ ​Netherlands​ ​in​ ​2014,​ ​and​ ​subsequently​ ​became​ ​actively​ ​involved​ ​with the​ ​Melanoma​ ​Patients​ ​Network​ ​Europe.​ ​As​ ​both​ ​a​ ​scientist​ ​and​ ​a​ ​patient,​ ​Andrew holds​ ​a​ ​unique​ ​perspective​ ​on​ ​the​ ​disease​ ​experience.

Otto​ ​Freijser​​ ​loves​ ​to​ ​challenge​ ​people​ ​to​ ​think​ ​differently,​ ​to​ ​solve​ ​problems

creatively​ ​and​ ​to​ ​help​ ​others​ ​succeed.​ ​As​ ​a​ ​self-proclaimed​ ​Lean​ ​Innovation Evangelist,​ ​he​ ​is​ ​the​ ​co-founder​ ​of​ ​Perpetulon,​ ​a​ ​management​ ​consultancy​ ​for business​ ​innovation.​ ​Otto​ ​also​ ​directly​ ​coaches​ ​young​ ​start-ups​ ​and​ ​is​ ​member​ ​of the​ ​Dutch​ ​Lean​ ​Startup​ ​Circle,​ ​a​ ​platform​ ​initially​ ​created​ ​for​ ​like​ ​minded​ ​individuals to​ ​get​ ​together​ ​and​ ​talk​ ​about​ ​the​ ​Lean​ ​Startup​ ​philosophy​ ​and​ ​today,​ ​to​ ​explore and​ ​test​ ​both​ ​old​ ​and​ ​new​ ​startup​ ​principles.

Krusenberg​ ​2017​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​LEAN​ ​ADVOCACY​ ​workshop​ ​for​ ​MPNEhubs​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​2

Further​ ​Information MPNE We​ ​are​ ​a​ ​network​ ​of​ ​predominantly​ ​European​ ​Melanoma​ ​patients,​ ​carers​ ​and advocates. http://www.melanomapatientnetworkeu.org MPNEhubs MPNE​ ​is​ ​a​ ​multi-dimensional​ ​network​ ​system​ ​of​ ​country-specific​ ​and interest-specific​ ​groups​ ​connected​ ​via​ ​a​ ​English-speaking​ ​central​ ​network.

MPNEhubs​ ​are​ ​those​ ​advocates​ ​who​ ​act​ ​as​ ​connectors​ ​between​ ​different​ ​networks.

Workshop​ ​program https://issuu.com/mpne/docs/krusenberg_2017_program_lean_advoca?e=1681948 8/55773202

We​ ​thank​ ​for​ ​their​ ​support

Krusenberg​ ​2017​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​LEAN​ ​ADVOCACY​ ​workshop​ ​for​ ​MPNEhubs​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​3