Contributions
Abstract: EP1719
Type: Poster Sessions
Abstract Category: Therapy - Others
Background: The MS in the 21st Century initiative, formed in 2011 and led by a Steering Group (SG) of international multiple sclerosis (MS) specialists and patient advocates, focusses on developing programmes to improve the education of and communication between healthcare professionals (HCPs) and people with MS (PwMS). Throughout 2016-2017, the SG conducted a mapping exercise to capture the existing educational offerings for PwMS across Europe and Canada (Phase 1) and USA, Asia-Pacific, South America and Middle East regions (Phase 3).
Aim: To report, for the first time, global findings of a comprehensive mapping exercise to identify the scope, diversity and number of online educational materials for PwMS produced by 1,309 stakeholders from 53 countries.
Method: Quantitative desk research (internet-based) was conducted and resources mapped against a set of standardised parameters. Research was conducted across multiple stakeholders including patient groups, pharmaceutical companies and public health providers. Resources were categorised by topic and format including, websites, information sheets and social media.
Results: Across the 53 countries mapped, a total of 13,324 different educational resources were identified. The majority of the resources were produced by 'patient groups' (48.4%) followed by 'specialist MS clinics' (18.9%). The most common topic covered by the resources was 'treatment' (25.3%) and the least covered topic was 'information for families' (1.5%). 'Patient groups' produced 73.0% of resources on 'information for families' but only 37.0% of resources on 'treatment'. Within the topic of 'treatment', 29.3% of resources by 'social media' stakeholders were about alternative treatment (i.e. holistic treatment etc.) a greater proportion than for any other stakeholder type. 'Public health providers' produced 23.8% of the resources about clinical trials despite only producing 2.8% of the total resources.
Conclusion: This research shows the breadth and depth of current educational materials available online for PwMS around the world. While the majority of these materials are accessed through 'patient group' or 'MS clinic' websites; within specific topics, sub-topics, and formats there is a large amount of variation in the relative contribution of different stakeholders. Therefore, when looking at patient education it is important to consider not just what resources are currently available but also which stakeholders are producing them.
Disclosure: The MS in the 21st Century initiative is financially supported solely by Merck KGaA, Darmstadt, Germany. Secretariat support and editorial input was provided by Cello Health Communications. Medical writing assistance was provided by Cello Health Communications (Owen Webb) and was funded by Merck KGaA, Darmstadt, Germany.
Sven Schippling receives consulting and speaker fees and travel grants from Biogen Idec, Bayer, Merck Serono, Sanofi Genzyme/Sanofi Aventis, Novartis, Teva, and research grants from Bayer, Biogen Idec, Merck Serono, Sanofi Genzyme/Sanofi Aventis, Novartis.
Diego Centonze has been an advisory board member for: Bayer, Schering, Merck Serono, Teva , Biogen Idec, GW Pharmaceuticals, Almirall, Sanofi Genzyme, Novartis. He has received honoraria for speaking or consultation fees from: Almirall, Bayer, Schering AG, Biogen Idec, Sanofi Genzyme, GW Pharmaceuticals, Merck Serono, Novartis, Sanofi Aventis, Teva. He is an external expert consultant for the European Medicines Agency (EMA), and the principal investigator in clinical trials for: Bayer, Schering AG, Biogen Idec, Novartis, Merck Serono, Sanofi Aventis, Teva, Roche.
Gavin Giovannoni is a steering committee member for: AbbVie (Daclizumab trials), Biogen Idec (BG12 and Daclizumab trials). He has received honoraria for speaking at Physicians summit Canbex. He is a clinical advisor regarding the development of VSN16. He has received consultancy fees for advisory board meeting for GW Pharmaceuticals, and speaking at launch of Sativex in Norway.
Elisabetta Verdun Di Cantogno is an employee of Merck KGaA.
MS in the 21st Century Steering Group members: Peter Rieckmann, Diego Centonze, Gavin Giovannoni, Celia-Oreja-Guevara, Jurg Kesselring, Dawn Langdon, Sarah A Morrow, Sven Schippling, Heidi Thompson, Patrick Vermersch, Birgit Bauer, Jocelyne Nouvet-Gire, Maria Paz Giambastiani, Maija Pontaga, Stanca Potra, Jane Shanahan, Pieter van Galen and David Yeandle
Abstract: EP1719
Type: Poster Sessions
Abstract Category: Therapy - Others
Background: The MS in the 21st Century initiative, formed in 2011 and led by a Steering Group (SG) of international multiple sclerosis (MS) specialists and patient advocates, focusses on developing programmes to improve the education of and communication between healthcare professionals (HCPs) and people with MS (PwMS). Throughout 2016-2017, the SG conducted a mapping exercise to capture the existing educational offerings for PwMS across Europe and Canada (Phase 1) and USA, Asia-Pacific, South America and Middle East regions (Phase 3).
Aim: To report, for the first time, global findings of a comprehensive mapping exercise to identify the scope, diversity and number of online educational materials for PwMS produced by 1,309 stakeholders from 53 countries.
Method: Quantitative desk research (internet-based) was conducted and resources mapped against a set of standardised parameters. Research was conducted across multiple stakeholders including patient groups, pharmaceutical companies and public health providers. Resources were categorised by topic and format including, websites, information sheets and social media.
Results: Across the 53 countries mapped, a total of 13,324 different educational resources were identified. The majority of the resources were produced by 'patient groups' (48.4%) followed by 'specialist MS clinics' (18.9%). The most common topic covered by the resources was 'treatment' (25.3%) and the least covered topic was 'information for families' (1.5%). 'Patient groups' produced 73.0% of resources on 'information for families' but only 37.0% of resources on 'treatment'. Within the topic of 'treatment', 29.3% of resources by 'social media' stakeholders were about alternative treatment (i.e. holistic treatment etc.) a greater proportion than for any other stakeholder type. 'Public health providers' produced 23.8% of the resources about clinical trials despite only producing 2.8% of the total resources.
Conclusion: This research shows the breadth and depth of current educational materials available online for PwMS around the world. While the majority of these materials are accessed through 'patient group' or 'MS clinic' websites; within specific topics, sub-topics, and formats there is a large amount of variation in the relative contribution of different stakeholders. Therefore, when looking at patient education it is important to consider not just what resources are currently available but also which stakeholders are producing them.
Disclosure: The MS in the 21st Century initiative is financially supported solely by Merck KGaA, Darmstadt, Germany. Secretariat support and editorial input was provided by Cello Health Communications. Medical writing assistance was provided by Cello Health Communications (Owen Webb) and was funded by Merck KGaA, Darmstadt, Germany.
Sven Schippling receives consulting and speaker fees and travel grants from Biogen Idec, Bayer, Merck Serono, Sanofi Genzyme/Sanofi Aventis, Novartis, Teva, and research grants from Bayer, Biogen Idec, Merck Serono, Sanofi Genzyme/Sanofi Aventis, Novartis.
Diego Centonze has been an advisory board member for: Bayer, Schering, Merck Serono, Teva , Biogen Idec, GW Pharmaceuticals, Almirall, Sanofi Genzyme, Novartis. He has received honoraria for speaking or consultation fees from: Almirall, Bayer, Schering AG, Biogen Idec, Sanofi Genzyme, GW Pharmaceuticals, Merck Serono, Novartis, Sanofi Aventis, Teva. He is an external expert consultant for the European Medicines Agency (EMA), and the principal investigator in clinical trials for: Bayer, Schering AG, Biogen Idec, Novartis, Merck Serono, Sanofi Aventis, Teva, Roche.
Gavin Giovannoni is a steering committee member for: AbbVie (Daclizumab trials), Biogen Idec (BG12 and Daclizumab trials). He has received honoraria for speaking at Physicians summit Canbex. He is a clinical advisor regarding the development of VSN16. He has received consultancy fees for advisory board meeting for GW Pharmaceuticals, and speaking at launch of Sativex in Norway.
Elisabetta Verdun Di Cantogno is an employee of Merck KGaA.
MS in the 21st Century Steering Group members: Peter Rieckmann, Diego Centonze, Gavin Giovannoni, Celia-Oreja-Guevara, Jurg Kesselring, Dawn Langdon, Sarah A Morrow, Sven Schippling, Heidi Thompson, Patrick Vermersch, Birgit Bauer, Jocelyne Nouvet-Gire, Maria Paz Giambastiani, Maija Pontaga, Stanca Potra, Jane Shanahan, Pieter van Galen and David Yeandle