Designing for search anddiscovery is crucial:an example from rare disease
“This exchange of information with mostly strangers (at first) can take somepressure off the ones we love. They do care abou...
“Online communities show me what others are going through, they help keepme updated on current NF1 topics, and also provid...
A story about...  Search  Discovery  Self-organization  Empowerment  Chutzpah  Enlightenment                   @brianloew ...
What is Spontaneous Coronary Artery Dissection?Source: Mayo Clinic                      @brianloew / brian@inspire.com   H...
Search         @brianloew / brian@inspire.com   HxD 2013   6
Discovery            @brianloew / brian@inspire.com   HxD 2013   7
Discovery            @brianloew / brian@inspire.com   HxD 2013   8
Discovery            @brianloew / brian@inspire.com   HxD 2013   9
A personal story                   @brianloew / brian@inspire.com   HxD 2013   10
...the search continues                    @brianloew / brian@inspire.com   HxD 2013   11
Ja                                              0"                                                   50"                  ...
Ja                                              0"                                                   50"                  ...
The call to action                     @brianloew / brian@inspire.com   HxD 2013   14
Growth of SCAD members  250"  200"               Laura Haywood-Cory posts               “All the SCAD Ladies”  150"       ...
A researcher heeds the call                    @brianloew / brian@inspire.com   HxD 2013   16
Growth of SCAD members  250"                                 Dr. Sharonne Hayes                                 launches p...
@brianloew / brian@inspire.com   HxD 2013   18
Initial findingsFrom Mayo Clinic Proceedings Sep, 2011CONCLUSION Our pilot demonstrates successful socialnetworking-enabled...
Growth of SCAD members  250"                                                           Initial Mayo findings published     ...
@brianloew / brian@inspire.com   HxD 2013   21
The future             @brianloew / brian@inspire.com   HxD 2013   22
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Designing for search and discovery is crucial: an example from rare disease

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"Designing for search and discovery is crucial: an example from rare disease," a presentation by Inspire CEO Brian Loew on March 25, 2013, at the Healthcare Experience Design Conference.

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Designing for search and discovery is crucial: an example from rare disease

  1. 1. Designing for search anddiscovery is crucial:an example from rare disease
  2. 2. “This exchange of information with mostly strangers (at first) can take somepressure off the ones we love. They do care about us, but often will simply notunderstand and at times things are better shared will relative strangers.”Male with Ehlers-Danlos Syndrome, 33,“In these online communities I get REAL information from those who are livingwith this disease. Where we live there are no specialists for NF 1 and very fewdoctors who have ever seen it. In these communities online I can find names ofdoctors and treatments.”Woman, 35, caregiver of son with neurofibromatosis type 1“Being in the sarcoidosis group allowed me to meet friends, learn about mysarcoidosis disease and ultimately find a doctor who has prescribed atreatment that is clearing up the symptoms. Some symptoms I didnt evenrealize I had, or that they were connected with the disease of sarcoidosis.”Woman with sarcoidosis, 70, from California @brianloew / brian@inspire.com HxD 2013 2
  3. 3. “Online communities show me what others are going through, they help keepme updated on current NF1 topics, and also provide a place for me to releasemy feelings with like-minded people.”Man with neurofibromatosis type 1, 28“Ive only been diagnosed for four years, but Ive learned more about whatmakes me the way I am in the six months or so that Ive been here than in allthe doctors appointments over the years.”Woman with Ehlers-Danlos Syndrome, 54, Virginia“The knowledge and support I have gained here have helped me make wisertreatment choices. The sarcoidosis group is truly a family.”Woman with sarcoidosis, 60, from Pennsylvania“I very recently found this site and already it has given me a wealth ofknowledge that I am sure will aid my recovery. My knowledge of my conditionhas at least tripled in 24 hours!”Woman with Nephrotic Syndrome, from the UK @brianloew / brian@inspire.com HxD 2013 3
  4. 4. A story about... Search Discovery Self-organization Empowerment Chutzpah Enlightenment @brianloew / brian@inspire.com HxD 2013 4
  5. 5. What is Spontaneous Coronary Artery Dissection?Source: Mayo Clinic @brianloew / brian@inspire.com HxD 2013 5
  6. 6. Search @brianloew / brian@inspire.com HxD 2013 6
  7. 7. Discovery @brianloew / brian@inspire.com HxD 2013 7
  8. 8. Discovery @brianloew / brian@inspire.com HxD 2013 8
  9. 9. Discovery @brianloew / brian@inspire.com HxD 2013 9
  10. 10. A personal story @brianloew / brian@inspire.com HxD 2013 10
  11. 11. ...the search continues @brianloew / brian@inspire.com HxD 2013 11
  12. 12. Ja 0" 50" 100" 150" 200" n 250" $0 7 Ap r$0 7 Ju l$0 7 Oc t$0 7 Ja n$ 08 Ap r$0 concrete connections 8 Katherine Leon makes with others with SCAD Ju l$0 8 Oc t$0 8 Ja n$ 09 Ap r$0 9 Ju l$0 9 Oc Growth of SCAD members t$0 9 Ja n$ 10 Ap r$1 0 Ju l$1 0 Oc t$1 0 Ja n$ 11 Ap r$1 1 Ju@brianloew / brian@inspire.com l$1 1 Oc t$1 1 Ja n$ 12 Ap r$1 2 Ju l$1 2 Oc t$1HxD 2013 2 12
  13. 13. Ja 0" 50" 100" 150" 200" n 250" $0 7 Ap r$0 7 Ju l$0 7 Oc t$0 7 Ja n$ 08 Ap r$0 concrete connections 8 Katherine Leon makes with others with SCAD Ju l$0 8 Oc t$0 8 Ja n$ 09 Ap r$0 9 Ju l$0 9 Oc Growth of SCAD members t$0 9 Ja n$ 10 Ap r$1 0 Ju l$1 0 Oc t$1 0 Ja n$ 11 Ap r$1 1 Ju@brianloew / brian@inspire.com l$1 1 Oc t$1 1 Ja n$ 12 Ap r$1 2 Ju l$1 2 Oc t$1HxD 2013 2 13
  14. 14. The call to action @brianloew / brian@inspire.com HxD 2013 14
  15. 15. Growth of SCAD members 250" 200" Laura Haywood-Cory posts “All the SCAD Ladies” 150" Katherine Leon makes concrete connections with others with SCAD 100" 50" 0" Ap 7 Ja Ap 8 Ja Ap 9 Ja Ap 0 Ja Ap 1 Oc Ja Ap 2 2 Oc Oc Oc Oc Oc 7 7 08 8 09 9 10 0 11 1 1 12 7 8 9 0 2 $0 r$0 t$0 r$0 t$0 r$0 t$0 r$1 t$1 r$1 l$1 t$1 r$1 t$1 l$0 l$0 l$0 l$1 l$1 n$ n$ n$ n$ n$ n Ju Ju Ju Ju Ju Ju Ja @brianloew / brian@inspire.com HxD 2013 15
  16. 16. A researcher heeds the call @brianloew / brian@inspire.com HxD 2013 16
  17. 17. Growth of SCAD members 250" Dr. Sharonne Hayes launches pilot research 200" Laura Haywood-Cory posts “All the SCAD Ladies” 150" Katherine Leon makes concrete connections with others with SCAD 100" 50" 0" Ap 7 Ja Ap 8 Ja Ap 9 Ja Ap 0 Ja Ap 1 Oc Ja Ap 2 2 Oc Oc Oc Oc Oc 7 7 08 8 09 9 10 0 11 1 1 12 7 8 9 0 2 $0 r$0 t$0 r$0 t$0 r$0 t$0 r$1 t$1 r$1 l$1 t$1 r$1 t$1 l$0 l$0 l$0 l$1 l$1 n$ n$ n$ n$ n$ n Ju Ju Ju Ju Ju Ju Ja @brianloew / brian@inspire.com HxD 2013 17
  18. 18. @brianloew / brian@inspire.com HxD 2013 18
  19. 19. Initial findingsFrom Mayo Clinic Proceedings Sep, 2011CONCLUSION Our pilot demonstrates successful socialnetworking-enabled research participantengagement and recruitment amongmembers of an international disease-specific online community and outlines anovel methodology to obtainretrospective and prospective data frompersons with uncommon, poorlyunderstood conditions. Our pilot servesas a model as we develop a moreextensive, much-needed retrospectiveand prospective study of SCAD. Thisprocess of recruiting research trialparticipants with self-identifiedconditions from social networkingInternet sites represents a mechanismto develop a novel “multicenterdisease registry” that could bereplicated to study and propelmedical advances in other uncommonconditions that may not otherwise besubjects of active investigation. @brianloew / brian@inspire.com HxD 2013 19
  20. 20. Growth of SCAD members 250" Initial Mayo findings published Dr. Sharonne Hayes launches pilot research 200" Laura Haywood-Cory posts “All the SCAD Ladies” 150" Katherine Leon makes concrete connections with others with SCAD 100" 50" 0" Ap 7 Ja Ap 8 Ja Ap 9 Ja Ap 0 Ja Ap 1 Oc Ja Ap 2 2 Oc Oc Oc Oc Oc 7 7 08 8 09 9 10 0 11 1 1 12 7 8 9 0 2 $0 r$0 t$0 r$0 t$0 r$0 t$0 r$1 t$1 r$1 l$1 t$1 r$1 t$1 l$0 l$0 l$0 l$1 l$1 n$ n$ n$ n$ n$ n Ju Ju Ju Ju Ju Ju Ja @brianloew / brian@inspire.com HxD 2013 20
  21. 21. @brianloew / brian@inspire.com HxD 2013 21
  22. 22. The future @brianloew / brian@inspire.com HxD 2013 22

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