EMSP ANNUAL CONGRESS, BRUSSELS MAY 12/13, 2011
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1 Patients Organizatins and Industry Dnrs: BUILDING SUSTAINABLE RELATIONSHIP EMSP ANNUAL CONGRESS, BRUSSELS MAY 12/13, 2011 Jean-Françis GRENIER, M.D. PharmExpand SPRL
2 It Can and Des Wrk All these cmpanies supprt EMSP regularly, even thugh it is nt yur purpse t help them sell their drugs Nthing matters t decent peple in the industry mre than making sure patients get the best pssible treatment Because in tday s envirnment, industry has nt nly a mral but legal and financial bligatins t demnstrate that their drugs are prmted and used apprpriately: Right patients Right way Surce: Françis Meurgey, OUKELOS SPRL
3 What Partnership Shuld NOT Lk Like Cnflict f Interest Surce: TheGlss.cm & Scientific American
4 What D Pharma Cmpanies Want? They want t understand patients perspective n the disease They want t help patients imprve the quality f their dialgue with physicians, particularly highly-trained specialists They want t recruit patients in their clinical trials They want reimbursement fr their latest prduct They want t maximize cmpliance t treatment Of curse, they want t sell their prducts! Surce: Françis Meurgey, OUKELOS SPRL
5 The Patient Is N Lnger Passive... Surce: British Medical Jurnal 1999;319(18 September):762.
6 Patients Are Getting Mre Invlved High The In cntrl Severity f cnditin Mderate The Infrmed The Invlved Lw The Accepting Gd-like Partner Supplier Attitude twards physician Surce: Harris Interactive 10,000 patient survey (Oct-99) and BCG analysis
7 Pharma has (finally) recgnized the imprtance f patients and their needs Shift f Fcus Surce: healthcarepackaging.cm & frumed-santé-dz.rg
8 Patient-Centric Value Chain Invlve patient assciatins in clinical trial recruitment Explre patient-centric distributin mdels Build patient-friendly prtcl design and define patientrelevant clinical endpints Develpment Manufacturing & Distributin Market Access Invlve patients in strategic discussins f price setting and market access appraches Patients Set up and train a dedicated reimbursement cunseling staff Understand disease patient experience t better characterize unmet needs Research Marketing & Sales Develp tls t enrich physician/patient dialgue Medical Affairs Create virtual patient cmmunities t facilitate experience-sharing Train Disease Champins in a therapeutic dmain in rder t imprve quality f care and cmpliance
9 Pssible Initiatives by PharmaC Establish standing Patient Advisry Bard by disease Make patient insight a key cmpnent f Brand Plan Invlve patients systematically in develping Prmtinal materials (tne, language, images,...) Market Research questinnaires Prvide frum fr NGOs t share best practices n patient supprt services Help patient supprt grups with admin/pr supprt Pilt ttal care slutin fr severe chrnic disease Nurse prgram Smartphnes and Online supprt (disease infrmatin, drug cmpliance, patient diary, physician finding, respite fr caregivers, etc) Surce: Françis Meurgey, OUKELOS SPRL
10 A few wrds n Partnership Partnership Is an arrangement where parties agree t cperate t advance their mutual interests Can greatly benefit individuals, entities, and scieties But can als greatly damage the partners Cnflict f interest Ethical prblematic
11 Partnership: Basic Principles Mutual respect fr the aims and integrity f each party Familiarise with each ther s structures and key peple Delineate clearly what yu are nt ready t d fr each ther, and agree n where yur cllabratin will stp Yu will never prmte, endrse r recmmend their pharmaceutical prduct Will nt give r share yur lists f members r patients Surce: Relatinship between the EMSP and the pharmaceutical industry Cde f cnduct & Françis Meurgey, OUKELOS SPRL
12 G fr Lng-Term Relatinship Identify areas where yu can bth benefit frm a sustained effrt Have a candid discussin with yur industry cunterparts abut yur and their Shrt-Term and Lng-Term bjectives Cmpare and cntrast yur gals and identify very precisely areas f cmmn interest and prgrams yu can run tgether Surce: Françis Meurgey, OUKELOS SPRL
13 Yu and the industry partner have many cmmn interests The well being f peple with MS Understanding f MS and the need fr treatment Develpment f new and mre effective treatments Rigrus clinical trials f drugs Take up f effective drugs Educatin f patients and families Educatin f physicians Surce: Relatinship between the EMSP and the pharmaceutical industry Cde f cnduct
14 Starting n the Right Ft Arrange a face-t-face meeting nce cntact has been initiated Present: yur advcacy missin yur clear and transparent general bjectives yur specific prgram bjectives Explain hw yur grup perates in terms f industry relatinships Understand hw the industry dnr itself wrk Surce: Françis Meurgey, OUKELOS SPRL
15 Preserving Yur Reputatin Yu cannt and shuld nt under any circumstances cmprmise n yur cre values f: Independence Integrity Transparency Knw when t say NO Diversify yur surces f funding s that yu never becme t dependent n ne dnr Cnsider that all yur agreements are public even if they are written in cnfidence Surce: Françis Meurgey, OUKELOS SPRL
16 Establishing Trust Behave in a business-like manner: cme prepared keep yur cmmitments be discrete abut yur discussins Be hnest and direct Dn t avid difficult discussins Keep and share minutes f yur meetings Cmmunicate regularly Dn t hesitate t give psitive and negative feedback t each ther Establish written cntracts detailing the supprt yu will give each ther (financial, persnal, ther cmmitments) Surce: Françis Meurgey, OUKELOS SPRL
17 Written agreements between patient rganisatins and the pharmaceutical industry Name f the activity Names f partnering rganisatins Type f activity (unrestricted grant, specific meeting, publicatin, etc.) Objectives Agreed rle f the pharmaceutical cmpany and patient rganisatin Time-frame Amunt f funding Descriptin f significant indirect/nn-financial supprt (dnatin f PR agency s time, free training curses, etc) Cde(s) f practice that apply Signatures Surce: EFPIA CODE OF PRACTICE ON RELATIONSHIPS BETWEEN THE PHARMACEUTICAL INDUSTRY AND PATIENT ORGANISATIONS
18 Practical Tips fr Fund-Raising Apprach cmpanies well ahead f prduct launch in yur cuntry Identify and develp relatins with Medical Affairs, Marketing and whenever pssible with the General Manager Inquire abut the dnr s budget planning cycle Always cntact pharma cmpanies in Spring: when they develp their next year s budget If pssible, agree n a multi-year prgram and btain a multi-year cmmitment Create an League fr MS in yur cuntry where all pharma cmpanies are represented and engage in cmmn prjects Think creatively beynd pharma: medical devices, imaging cmpanies, disability aids and devices Surce: Françis Meurgey, OUKELOS SPRL
19 Cmpanies currently develping MS drugs Nvartis: finglimd (Gilenya ) ral, apprved Teva/Active Bitech: laquinimd - ral, Ph. III Bigen-Idec: daclizumab (Zenapax ) IV, Ph.III Genzyme: alemtuzumab (Campath ) IV, Ph.III Sanfi-aventis: teriflunmide, Ph. III Rche: rituximab (Rituxan/MabThera ) IV, Ph.II/III Opexa: cell therapy (Tvaxin ) sub-q, Ph.IIb J&J/Centcr: CNTO 1275 sub-q, Ph.II Rche/Bigen: crelizumab IV, Ph.II GSK: firategrast ral, Ph.II GSK: fatumumab (Arzerra ) Ph.I
20 Facts f Pharma Life In this wrld nthing can be said t be certain, except death and taxes. Benjamin Franklin In the pharmaceutical wrld, nthing is certain, except patent expiry and taxes! Sme f yur spnsrs will disappear, either because their drug: has failed in clinical trials Has been genericized Yu shuld be able t anticipate these things, and prepare fr this eventuality Surce: Françis Meurgey, OUKELOS SPRL
21 Sustainable Partnership: Gals achieved! Surce: istckpht.cm
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