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 BIO Briefing February 4, 2015
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Transcript of Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey
Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey
BIO Briefing February 4, 2015
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► 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
2014 Inspire Annual Patient and Caregiver Survey Background
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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
Survey Insights: Interacting with Physicians
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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
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Ø The empowered patient plays a large role in making treatment decisions
Making Treatment Decisions
In collabora9on: 69%
Pa9ent-‐driven: 20%
MD-‐driven: 11%
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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
Survey Insights: Obtaining Information
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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
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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
Survey Insights: Interacting with the Industry
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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’
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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…
Survey Insights: Desired Tools for Healthcare in the Future
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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
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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
Hearing the Voice of the Empowered Patient: Firsthand Accounts
