Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.
Cabrera Giraldez, M. et al.: The potential of social computing for biomedical research on rare diseases <ul><li>This slide...
The potential of Social Computing for Biomedical Research on Rare Diseases Medicine 2.0 Conference – Toronto Sept. 4-5 NOT...
IPTS : Part of DG JRC of the EC 7 Research Institutes across Europe Mission : “to provide customer-driven support to the E...
Objectives of our exploratory work <ul><li>Assessing the potential of  Web 2.0 for rare diseases </li></ul><ul><li>Assessi...
Families and patients The 5 actors Researchers Industry Administration 1+1+1+1+1> 5 Clinicians web 2.0
<ul><ul><li>Very  low  population  densities </li></ul></ul><ul><ul><li>Rare Diseases (RD) usually chronic, difficult to m...
<ul><li>RD patients and their orgs (~1700 in the EU) amongst the  most motivated for connectivity groups </li></ul><ul><li...
<ul><li>Users as producers ( prosumers ) </li></ul><ul><li>Many to many, person to person communication </li></ul><ul><li>...
In general, a potential of social computing (web2.0) for… <ul><li>Supporting patients and families </li></ul><ul><li>Helpi...
CollabRx http://collabrx.com/index.php Collaborative research developed by the Hide & Seek Foundation for Lysosomal Diseas...
Multiple Sclerosis Incipient positive experience http://www.nationalmssociety.org/research/researchers-need-you/index.aspx...
ALS at Patientslikeme 6/100,000 http://www.patientslikeme.com/research See how ALS patients taking an experimental treatme...
Rareshare.org Kassett is an investor in Nutra Pharma launch Rareshare.org, a social networking site for people with rare d...
IAN Project/1 Interactiv autism network (IAN Project)  IAN Community    IAN Research http://www.ianproject.org, http://ia...
Researchers using IAN for Subject Recruitment <ul><li>Researchers: </li></ul><ul><li>Have access to a large and  growing d...
<ul><li>Supporting the claim that there is a market place    global </li></ul><ul><li>Let the ´customers´ do the work </l...
Multidisciplinary Focus Group Seville Aug. 2008 <ul><li>General consensus on the potential of web 2.0: </li></ul><ul><ul><...
Challenges/1 <ul><li>Different  scales , different levels of info:  1) Input for new research questions 2) Adverse effects...
Challenges/2 <ul><li>Methodologies to extract knowledge for research out structured/unstructured information </li></ul><ul...
Conclusions/1 <ul><li>“ Advantage”: RD patients more desperate to find a solution    more active and likely to give perso...
<ul><li>Governance </li></ul><ul><ul><li>Privacy  and data  confidentiality ;  purchasing  of Pharma while  advising  RD a...
  [email_address] [email_address] [email_address] http://is.jrc.es Thanks!
Upcoming SlideShare
Loading in …5
×

The potential of social computing for biomedical research on rare diseases [5 Cr3 1330 Cabrera]

1,268 views

Published on

  • Be the first to comment

  • Be the first to like this

The potential of social computing for biomedical research on rare diseases [5 Cr3 1330 Cabrera]

  1. 1. Cabrera Giraldez, M. et al.: The potential of social computing for biomedical research on rare diseases <ul><li>This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team </li></ul><ul><li>Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com ) </li></ul><ul><li>Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php </li></ul>
  2. 2. The potential of Social Computing for Biomedical Research on Rare Diseases Medicine 2.0 Conference – Toronto Sept. 4-5 NOTES 1. PLACE, DATE AND EVENT NAME 1.1. Access the slide-set place, date and event name text box beneath the JRC logo from the Slide Master. 1.2. Do not change the size nor the position of that text box. 1.3. Replace the mock-up texts for the place (“Place”), the date (“dd Month YYYY”) and the event name (“Event Name”) with your own texts. 1.4. Set it in MetaPlus Book Roman, if you own the typeface. Otherwise, keep the original typeface – Arial. 1.5. Keep the original flush-left justification. 1.6. Keep the original font colour (white). 1.7. Keep the original font body size (7 pt) and the text on one single line. 2. SLIDE NUMBER 2.1. The slide number on the banner’s lower right-hand side is automatically generated. 3. SLIDES 3.1. Duplicate the first slide as needed. 3.2. Do not change the size nor the position of the slide’s text box. 3.3. Try not to place more text on each slide than will fit in the given text box. 3.4. Replace the mock-up heading text (“Joint Research Centre (JRC)”) with your own text heading. 3.5. Set it in Eurostile Bold Extended Two or in Helvetica Rounded Bold Condensed, if you own one of these typefaces. Otherwise, keep the original typeface – Arial. 3.6. Keep the original flush-left justification. 3.7. Keep the original font colour (100c 80m 0y 0k). 3.8. Keep the original font body size (28 pt) and the heading on one single line whenever possible. Reduce the font body size if needed. 3.9. Replace the mock-up text (“The European Commission’s Research-Based Policy Support Organisation)”) with your own text. 3.10. Set it in MetaPlus Book Roman, if you own the typeface. Otherwise, keep the original typeface – Arial. 3.11. Keep the original flush-left justification. 3.12. Keep the original font colour (100c 80m 0y 0k). Use black if you need a second colour. 3.13. Keep the original font body size (22 pt) or reduce it if unavoidable. 3.14. Replace the EU-27 map mock-up illustration with your own illustration(s). 3.13. Try to keep your illustration(s) right- and top- or bottom-aligned with the main text box whenever possible. M. Cabrera, Institute for Prospective Technological Studies Joint Research Centre, European Commission
  3. 3. IPTS : Part of DG JRC of the EC 7 Research Institutes across Europe Mission : “to provide customer-driven support to the EU policy-making process by researching science-based responses to policy challenges that have both a socio-economic as well as a scientific/technological dimension” Modus operandi: desk research, expert groups, modelling, centres of expertise
  4. 4. Objectives of our exploratory work <ul><li>Assessing the potential of Web 2.0 for rare diseases </li></ul><ul><li>Assessing to what extent web 2.0 can be used for research purposes and how it can be optimized </li></ul><ul><li>To determine what public policy can do to enhance/make more efficient the existing applications and possible role of actors involved </li></ul>
  5. 5. Families and patients The 5 actors Researchers Industry Administration 1+1+1+1+1> 5 Clinicians web 2.0
  6. 6. <ul><ul><li>Very low population densities </li></ul></ul><ul><ul><li>Rare Diseases (RD) usually chronic, difficult to manage, some disregarded by the research/medical community and policy makers. Public health policy makers react to threats and prevalence, much less to RDs </li></ul></ul><ul><li>Research on RD scarce and scattered </li></ul><ul><li>Limited market for the Pharma  RD called “ orphan diseases ”, i.e. orphan of research, of market, and of policies </li></ul><ul><li>EC: policy on Orphan Drugs : The Orphan Medicinal Product Regulation (includes incentives to encourage research on RD). 2000. </li></ul><ul><li>White Paper &quot;Together for Health: A Strategic Approach for the EU 2008-2013&quot; </li></ul><ul><li>Public consultation regarding a European Action in the field of RD. </li></ul><ul><li>EC-funded research projects: (e.g. e-RARE) </li></ul><ul><li>..and a priority for the French Presidency </li></ul>NOTES 1. PLACE, DATE AND EVENT NAME 1.1. Access the slide-set place, date and event name text box beneath the JRC logo from the Slide Master. 1.2. Do not change the size nor the position of that text box. 1.3. Replace the mock-up texts for the place (“Place”), the date (“dd Month YYYY”) and the event name (“Event Name”) with your own texts. 1.4. Set it in MetaPlus Book Roman, if you own the typeface. Otherwise, keep the original typeface – Arial. 1.5. Keep the original flush-left justification. 1.6. Keep the original font colour (white). 1.7. Keep the original font body size (7 pt) and the text on one single line. 2. SLIDE NUMBER 2.1. The slide number on the banner’s lower right-hand side is automatically generated. 3. SLIDES 3.1. Duplicate the first slide as needed. 3.2. Do not change the size nor the position of the slide’s text box. 3.3. Try not to place more text on each slide than will fit in the given text box. 3.4. Replace the mock-up heading text (“Joint Research Centre (JRC)”) with your own text heading. 3.5. Set it in Eurostile Bold Extended Two or in Helvetica Rounded Bold Condensed, if you own one of these typefaces. Otherwise, keep the original typeface – Arial. 3.6. Keep the original flush-left justification. 3.7. Keep the original font colour (100c 80m 0y 0k). 3.8. Keep the original font body size (28 pt) and the heading on one single line whenever possible. Reduce the font body size if needed. 3.9. Replace the mock-up text (“The European Commission’s Research-Based Policy Support Organisation)”) with your own text. 3.10. Set it in MetaPlus Book Roman, if you own the typeface. Otherwise, keep the original typeface – Arial. 3.11. Keep the original flush-left justification. 3.12. Keep the original font colour (100c 80m 0y 0k). Use black if you need a second colour. 3.13. Keep the original font body size (22 pt) or reduce it if unavoidable. 3.14. Replace the EU-27 map mock-up illustration with your own illustration(s). 3.13. Try to keep your illustration(s) right- and top- or bottom-aligned with the main text box whenever possible. RARE DISEASES: some facts /1
  7. 7. <ul><li>RD patients and their orgs (~1700 in the EU) amongst the most motivated for connectivity groups </li></ul><ul><li>In research they have been trying to bridge the public research gap . </li></ul><ul><li>6 – 8 % population (25.000.000 Europeans ( ~ BENELUX ) </li></ul><ul><li>5.000 – 8.000 RDs. </li></ul><ul><li>80% genetic </li></ul><ul><li>Prevalence < 1 / 2.000 </li></ul><ul><li>Orphan treatments </li></ul>http://www.eurordis.org RARE DISEASES: some facts /2
  8. 8. <ul><li>Users as producers ( prosumers ) </li></ul><ul><li>Many to many, person to person communication </li></ul><ul><li>Usage of ICT for communication rather than transaction information more useful than transaction </li></ul><ul><li>Collective management of reputation </li></ul><ul><li>Self-regulation </li></ul><ul><li>Syndication – mash up content and open content </li></ul>Web 2.0 trends Our working definition: Social computing (or web 2.0) refers to digital applications that enable interaction and collaboration in such a way that users become participants ( co-creators not end-users ) that are strengthened through the network (as a collective resource )  RDs: Connecting off-line communities with virtual ones Change of Attitude
  9. 9. In general, a potential of social computing (web2.0) for… <ul><li>Supporting patients and families </li></ul><ul><li>Helping the clinicians </li></ul><ul><li>Contributing to Research </li></ul>The NewScientist 17.5.08 Potential
  10. 10. CollabRx http://collabrx.com/index.php Collaborative research developed by the Hide & Seek Foundation for Lysosomal Disease Research, and sponsored by the Dana’s Angels Research Trust (DART)
  11. 11. Multiple Sclerosis Incipient positive experience http://www.nationalmssociety.org/research/researchers-need-you/index.aspx MySpace 1 / 700
  12. 12. ALS at Patientslikeme 6/100,000 http://www.patientslikeme.com/research See how ALS patients taking an experimental treatment, lithium, are doing in real-time . 3.000 patients registered (7.000 in MS )
  13. 13. Rareshare.org Kassett is an investor in Nutra Pharma launch Rareshare.org, a social networking site for people with rare diseases. Nutra Pharma is currently testing a drug for adrenomyeloneuropathy (AMN). Discussion groups set up for 580 diseases, beta version, incipient http://rareshare.org/communities/adrenomyeloneuropathy http://rareshare.org/communities/systemic-capillary-leak-syndrome
  14. 14. IAN Project/1 Interactiv autism network (IAN Project) IAN Community  IAN Research http://www.ianproject.org, http://iancommunity.org Reproduced with permission of Kennedy Krieger Institute, Baltimore, MD An innovative online project designed to accelerate the pace of autism research by linking researchers and families. Families Care providers Researchers Scientific ideas & priorities New knowledge Data
  15. 15. Researchers using IAN for Subject Recruitment <ul><li>Researchers: </li></ul><ul><li>Have access to a large and growing data set </li></ul><ul><li>Are able to recruit subjects efficiently </li></ul><ul><li>Are provided with detailed symptom prevalence and treatment data </li></ul><ul><li>Are given a forum </li></ul><ul><li>Share their insights with other researchers worldwide </li></ul>IAN Project/2 With permission of Kennedy Krieger Institute, Baltimore, MD (adapted) <ul><li>Problems and Opportunities: </li></ul><ul><li>Subject recruitment difficulties . </li></ul><ul><li>Mistrust between families and researchers because of the “refrigerator mother” legacy </li></ul><ul><li>Treatments for autism, and the vaccine controversy. </li></ul><ul><li>Parents are the primary source of information. </li></ul><ul><li>Many parent-report psychometric tools exist. </li></ul><ul><li>… . </li></ul>
  16. 16. <ul><li>Supporting the claim that there is a market place  global </li></ul><ul><li>Let the ´customers´ do the work </li></ul><ul><li>Social networks  closeness, concentration, sufficient cases to invest </li></ul><ul><ul><li>Example: 21.000 families with autism patients associated in only one year on IAN Project </li></ul></ul><ul><li>(iHealthBeat, 18/03/2008) </li></ul>Anderson, 2004 http://www.longtail.com) The “Long Tail” theory and RD Social Networks A new market place?  A message for the Pharma: increasing collaboration and voluntary activities contribute to commercial productivity (long tail)
  17. 17. Multidisciplinary Focus Group Seville Aug. 2008 <ul><li>General consensus on the potential of web 2.0: </li></ul><ul><ul><li>A central place for patients (often geographically dispersed and isolated) </li></ul></ul><ul><ul><li>For both evidenced-based and not scientifically validated info but experienced by patients. </li></ul></ul><ul><ul><li>Could improve QoL although this yet to be studied scientifically </li></ul></ul><ul><ul><li>Research outcomes could be found ( freak occurrences , drug interactions , social science outcomes, clinical outcomes) </li></ul></ul><ul><ul><li>A model of innovation (e.g., champions; innovators) </li></ul></ul><ul><ul><li>Main challenges: privacy, confidentiality, informed consent </li></ul></ul><ul><ul><li>Technology : no need to reinvent the wheel. Open source for more interoperability </li></ul></ul>
  18. 18. Challenges/1 <ul><li>Different scales , different levels of info: 1) Input for new research questions 2) Adverse effects of drugs 3) Social research 4) Clinical outcomes </li></ul><ul><li>How to best connect experts from different fields </li></ul><ul><li>Finding patients and organisations to develop pilots </li></ul><ul><li>Getting science out of noisy RDs blogging </li></ul><ul><li>Competition among platforms scattering of research efforts? </li></ul><ul><li>Membership participation or open participation? </li></ul><ul><li>Inclusion </li></ul><ul><ul><li>Connection speed, economic status, physical or mental disabilities, age, accessibility in developing countries </li></ul></ul><ul><li>Languages </li></ul><ul><ul><li>Difficulties to get accurate statistics and interconnectivity </li></ul></ul>
  19. 19. Challenges/2 <ul><li>Methodologies to extract knowledge for research out structured/unstructured information </li></ul><ul><ul><li>Ontologies for natural language and semantics, granularity, distilling, digesting the info, coping with ambiguity and redundancy </li></ul></ul><ul><li>Validation of information/opinions </li></ul><ul><ul><li>Bias, peer reviewing v. volume reviewers ? </li></ul></ul><ul><ul><li>Existing networks could be play a validation role (e.g. Orphanet) </li></ul></ul><ul><li>Ambiguity in RD and Trust </li></ul><ul><ul><li>Synonyms , patients even enrolling wrongly, Informed Consent </li></ul></ul><ul><li>Data Protection </li></ul><ul><ul><li>Reuse of patient data for other purposes? -e.g. insurances, employers, risk of misuse by criminal groups? - e.g. YouTube video threatening patients); interest groups (unclear who pays and what for) </li></ul></ul>
  20. 20. Conclusions/1 <ul><li>“ Advantage”: RD patients more desperate to find a solution  more active and likely to give personal data and experiences </li></ul><ul><li>Public policy </li></ul><ul><ul><li>A variety of policies ( health, research, technology, inclusion …) </li></ul></ul><ul><ul><li>Support research on Social Sciences (e.g. u nderstand roles of lurkers) </li></ul></ul><ul><ul><li>IPR policies (different amongst EU countries). </li></ul></ul><ul><ul><li>Data protection v. making easier for researchers the use of anonymized dat a </li></ul></ul><ul><ul><li>Endorsement of sites, thereby increasing trust: a patient charter? EU &quot;trust stamp&quot; </li></ul></ul><ul><li>Health service provision/Administration </li></ul><ul><ul><li>Give incentives to health professionals; encourage patients to use </li></ul></ul><ul><ul><li>RD communities as hospital-based platforms of excellence , incorporate into financial structure of healthcare systems and technology assessment </li></ul></ul>
  21. 21. <ul><li>Governance </li></ul><ul><ul><li>Privacy and data confidentiality ; purchasing of Pharma while advising RD as a vulnerable group, HonCode, HCBE… could be insufficient </li></ul></ul><ul><li>Resource generation </li></ul><ul><ul><li>Shape and support educational system to incorporate web 2.0 into health professional training </li></ul></ul><ul><li>Market & Business, Sustainability & Financing </li></ul><ul><ul><li>Private funding/patients orgs. Very early business models. </li></ul></ul><ul><ul><li>Sustainable when proven usefu l; premium services not a good idea </li></ul></ul><ul><ul><li>EU starts-ups looking for risk capital, although few investors wishing to invest </li></ul></ul>Conclusions/2
  22. 22.   [email_address] [email_address] [email_address] http://is.jrc.es Thanks!

×