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Voice of the Empowered Patient:
An Analysis of the Inspire Annual Survey
BIO Briefing
February 4, 2015
2
► 2014 Inspire Annual Patient and Caregiver Survey
Background
► Survey Insights
•  Interacting with Physicians
•  Obtain...
2014 Inspire Annual Patient and
Caregiver Survey Background
4
Ø  Purpose: To bring the perspectives of e-
patients to life on a large scale
Ø  Launch: After several months of plann...
Survey Insights: Interacting with
Physicians
6
Ø  When going to see their doctor, the empowered patients of Inspire are
PREPARED
Interacting with Physicians
30%	
  
2...
7
Ø  The empowered patient plays a large role in making treatment decisions
Making Treatment Decisions
In	
  collabora9on...
8
Ø  The empowered patient will ask about new treatments and often does so
frequently
Pursuing New Treatments
52%	
  
35%...
Survey Insights: Obtaining Information
10
Ø  Empowered patients often use a number of online sources to obtain
information about their health conditions
Seeking...
11
Ø  While these patients use a variety of social media outlets personally, they
typically do not turn to these sources ...
Survey Insights: Interacting with the
Industry
13
Ø  Although a patient-centric model is where healthcare in the U.S. is going,
there are serious inroads that must be m...
14
Ø  Half of all respondents reported experiencing difficulties with the
affordability/cost of their treatments at some ...
Survey Insights: Desired Tools for
Healthcare in the Future
16
Ø  While these empowered patients would be open to a number of tools/
materials to use with their physicians, electron...
17
Ø  Although these patients and caregivers endorsed the availability of
electronic/online tools to help them better man...
Hearing the Voice of the Empowered
Patient: Firsthand Accounts
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Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey

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Inspire teamed with the trade organization Biotechnology Industry Organization for the seminar, “Connecting With the Empowered Patient in the Digital Age,” held Feb. 2015 at BIO headquarters in Washington, DC. The event brought together leaders from the patient advocacy community and life sciences industry to discuss how social media can be utilized to empower patients and engage advocates.
Inspire's Research Director Dave Taylor led the session, "Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey."

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Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey

  1. 1. Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey BIO Briefing February 4, 2015
  2. 2. 2 ► 2014 Inspire Annual Patient and Caregiver Survey Background ► Survey Insights •  Interacting with Physicians •  Obtaining Information •  Interacting with the Industry •  Desired Tools for Healthcare in the Future ► Hearing the Voice of the Empowered Patient: Firsthand Accounts •  Katherine Leon, rare disease patient advocate and Co- founder, SCAD Alliance •  Joe Murphy, patient advocate and colon cancer survivor Agenda 5 minutes 15 minutes 10 minutes
  3. 3. 2014 Inspire Annual Patient and Caregiver Survey Background
  4. 4. 4 Ø  Purpose: To bring the perspectives of e- patients to life on a large scale Ø  Launch: After several months of planning and design, Inspire began sending survey invitation emails to its members on December 11, 2014. Ø  Fielding: In order to reach the ~490,000 members who have opted to receive such communications, invitations had to be sent evenly through December 23rd. Ø  Closing: The survey was officially closed on January 8, 2015. Ø  Impact: During the month in which the survey was available, 13,633 Inspire members completed the assessment. Annual Survey Background
  5. 5. Survey Insights: Interacting with Physicians
  6. 6. 6 Ø  When going to see their doctor, the empowered patients of Inspire are PREPARED Interacting with Physicians 30%   25%   31%   14%   0%   20%   40%   60%   80%   100%   Always   Frequently   Some;mes   Never   A"end  doctor's  appointments  with   someone  else   %  of  Responses   33%   30%   28%   9%   0%   20%   40%   60%   80%   100%   Always   Frequently   Some;mes   Never   Brings  prepared  notes/ques9ons  to   doctor's  appointments   %  of  Responses  
  7. 7. 7 Ø  The empowered patient plays a large role in making treatment decisions Making Treatment Decisions In  collabora9on:  69%     Pa9ent-­‐driven:  20%     MD-­‐driven:  11%    
  8. 8. 8 Ø  The empowered patient will ask about new treatments and often does so frequently Pursuing New Treatments 52%   35%   5%   8%   Who  ini9ates  new  treatment   discussions   You   A  doctor   Other   No  new  Tx  discussions   29%   16%   31%   13%   11%   Frequency  of  new  treatment   discussions   At  every  visit   Every  other  visit   A  couple  ;mes  a  year   Once  a  year   Never  
  9. 9. Survey Insights: Obtaining Information
  10. 10. 10 Ø  Empowered patients often use a number of online sources to obtain information about their health conditions Seeking Medical Information 1%   3%   11%   12%   22%   24%   27%   31%   38%   42%   49%   51%   76%   78%   0%   20%   40%   60%   80%   100%   None   Other   Videos   In-­‐person  pa;ent  support  groups   Support  and  advocacy  groups   Nurses   Other  pa;ents   Friends  and  family   Materials  provided  by  the  doctor’s  office   Books  or  magazines   Online  support  communi;es   Medical/scien;fic  ar;cles   Online  search  engines  (e.g.,  Google,  Bing)   Condi;on-­‐specific  websites  or  blogs   Sources  of  informa9on  used  for  health  condi9ons   %  of  Responses   Condi;on-­‐specific   websites  or  blogs   was  also  reported   to  be  the  most   helpful  source  of   informa;on  used  to   be_er  understand   members’  health   condi;ons  
  11. 11. 11 Ø  While these patients use a variety of social media outlets personally, they typically do not turn to these sources for their health conditions Social Media Usage 23%   65%   25%   11%   19%   0   25%   14%   40%   4%   13%   21%   25%   18%   1%   2%   28%   4%   2%   14%   4%   33%   0%   20%   40%   60%   80%   100%   Personal  Use   Medical  Use  
  12. 12. Survey Insights: Interacting with the Industry
  13. 13. 13 Ø  Although a patient-centric model is where healthcare in the U.S. is going, there are serious inroads that must be made to strengthen the relationship between patients and the industry Relationship with Pharma 10%   17%   37%   35%   For  the  medica9ons  you  take,  how   many  do  you  know  the  manufacturer   All   Most   Some     None   13%  of  respondents  felt  like  they  indeed  had  a   rela;onship  with  the  companies  that  made   their  medica;ons;  at  best,  it  is  said  to  be  a   ‘limited’  connec;on     In  contrast,  40%  of  respondents  indicated  they   have  a  rela;onship  with  their  pharmacist;  in   these  cases,  the  connec;on  was  considered  to   be  ‘good’  
  14. 14. 14 Ø  Half of all respondents reported experiencing difficulties with the affordability/cost of their treatments at some point in time Challenges with Treatment Costs 29%   47%   56%   60%   0%   50%   100%   Cost  of  rou;ne  lab   monitoring   Out  of  pocket  costs   (e.g.  travel  &   logis;cs)   Paying  for  other   medica;ons  related   to  Tx   Paying  for   treatments   Aspects  in  which  PTs  had  cost  issues   %  Responses   Premiums:  55%     Copays:  44%     Ancillary  Treatment   Costs:  37%     Insurance-­‐Driven   Generic  Switches:   60%     Recent  cost  issues…  
  15. 15. Survey Insights: Desired Tools for Healthcare in the Future
  16. 16. 16 Ø  While these empowered patients would be open to a number of tools/ materials to use with their physicians, electronic/online materials are most widely preferred Suggested Tools for Improved Healthcare 59%   57%   47%   42%   40%   0%   20%   40%   60%   80%   100%   Electronic,  Detailed   Symptom  Tracker   Access  to  online   webinars  or  in-­‐person   conferences/speaker   sessions  to  learn   more  about  your   condi;on   Support  materials  for   friends/family   members  detailing   your  condi;on  and  its   symptoms   Printed,  Detailed   Symptom  Tracker   Tips/tac;cs  around   be_er  ways  to   communicate  with   your  physician(s)   Recommended  tools  to  help  pa9ents  during  doctor’s  visits   %  Responses  
  17. 17. 17 Ø  Although these patients and caregivers endorsed the availability of electronic/online tools to help them better manage their health conditions, mobile apps are not as strongly sought after solutions Mobile App Usage 9%   8%   12%   72%   Frequency  of  mobile  app  usage  for   healthcare   Always   Frequently   Some;mes   Never   Pa;ents  who  use  smartphone  apps  to   manage  their  condi;ons  do  so  to:     -­‐  Help  prepare  for  doctor’s  visits   -­‐  Search  for  informa;on  online   -­‐  Set  up  dosing  reminders     Among  those  who  do  not  use   smartphone  apps,  only  43%  felt  that,   in  theory,  this  type  of  tool  would  be   helpful  in  managing  their  health   condi;ons  
  18. 18. Hearing the Voice of the Empowered Patient: Firsthand Accounts

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