The document outlines the findings of a disease awareness program research involving 17 executives from leading pharmaceutical and biotech organizations, focusing on best practices and structural effectiveness. Key insights reveal a shift towards medical leadership in disease awareness efforts, with marketing currently being the predominant funding source. Additionally, the importance of building partnerships with patient advocacy groups was emphasized as crucial for successful disease awareness campaigns.

1. Disease Awareness Program Excellence:
Structure, Activities & Resources
Needed for Effective Pipeline Support
Best Practices, LLC
Strategic Benchmarking Research

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Table of Contents
 Executive Summary pgs. 4-10
 Research Overview pg. 4
 Participating Companies pg. 5
 Key Findings Overview pg. 6
 Key Insights Overview pg. 7
 Overview of DA Timing pgs. 8
 I. Participant Demographics pgs. 9-13
 II. Program Effectiveness and Structure pgs. 14-19
 III. Timing of Disease Awareness Activities pgs. 20-27
 IV. Disease Awareness Budget and Spend pgs. 28-36
 V. Involvement of Advocacy and Legal pgs. 37-45
 VI. Social Media pgs. 46-53
 VII. Best Practices and Pitfalls pgs. 54-56
 VIII. Narratives from Interviews pgs. 57-66
 VIIII. Key Findings pgs. 67-72
 X. Appendix pgs. 73-78
 About Best Practices, LLC pg. 79

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Field Research & Insight Development:
Sixteen leaders at 16 leading pharmaceutical and
biotech organizations participated in this study. In
addition, one global communications firm representing
a biopharma client also participated.
Four executives also participated in deep-dive
operational interviews.
Additional secondary research
• Spotlight effective practices
around the timing, investment,
and activities for disease
awareness programs
• Present insights, best practices
and pitfalls that participants
have learned from past disease
awareness campaigns
Research Overview: Objectives & Methodology
Research Objectives:
 Disease Awareness Program Timing and Investment
 Timing for Beginning /Ending Campaigns and Spend Trends across Campaign Lifecycle
 Peak Year Investment Level and Factors Influencing Resource Levels
 Disease Awareness Activities and Critical Success Factors
 Timing and Utilization of Activities and Activities Conducted on Social Media
 Best Practices for Disease Awareness Programs
Business Objective:
Disease state awareness campaigns are one of the few ways to reach patients & physicians before a product is approved.
These campaigns set the table for future marketing efforts at product launch and post-launch. While some organizations
effectively utilize disease awareness programs, others struggle to connect campaigns to their targeted audiences.

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Universe of Learning: 17 Top Companies Contributed to This Research
This study engaged 17 executives from leading pharmaceutical, biotech, and communications companies.
Benchmark Class

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N=16
Given the job level of participants (44% director and 31% vice president), this study is presenting the perspectives of a
veteran group of executives with many years of experience.
Seventy-five Percent of Participants at Director or VP Level
% Respondents
Q.) Please list your current job title.
Director, all levels
44%
VP
31%
Manager
13%
Global Lead
6%
Head
6%
Participant Titles

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N=17
While a centralized structure was the most common approach for participants (35%), other structures were also utilized
such as those taking a hybrid approach (36%), and a decentralized approach (30%).
No Organizational Structure Strongly Favored by Participants
% Respondents
Q.) Disease Awareness Organizational Structure Type: Which of the following models best describes the organizational
structure of your disease awareness program. (Choose one)
Other: Centralized through Marketing
35%
24%
18%
12%
12%
Centralized
Hybrid by business unit/division
Decentralized by geography
Decentralized by business unit/division
Hybrid by geography
Disease Awareness Organizational
Structure

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N=17
Marketing has historically been the function most involved in disease state awareness and that still may be the case. But
interviews and secondary research point to medical as the future leader of disease awareness, given both the regulatory
environment and the expertise the function brings to the table. But as this chart shows, many functions are involved in DA.
Marketing Leads Disease Awareness for Most but Shift is to Medical
% Respondents
Q.) Disease Awareness Leadership and Involvement: In the following table, please indicate both: A) whether each function is
involved in disease awareness programs; and B) which functions take a leading role in disease awareness programs.
89%
83%
44%
50%
44%
28%
11%
61%
44%
17%
6%
22%
0%
6%
Marketing
Medical
Scientific Affairs
Legal
Patient Advocacy
Market Research
Other
Functional Involvement & Leadership in DA
Function(s) involved with Disease Awareness Programs Function(s) that lead Disease Awareness Programs
Other: Communications and Sales
“I think it has been shifting to
medical for a number of years now.
Medical tends to be more
conservative than commercial. I think
we are seen as more of a medical
issue and that’s the right way to see
it since we are trying to raise the
medical IQ of patients and physicians
around specifics of disease state.”
-- Senior Director, Market Research

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N=16
Unbranded websites for HCPs and patients was clearly the most utilized disease awareness tool. The next most used DA
activity is presentations/handouts at conferences, closely followed by MSL presentations to HCPs. Two of the top three
activities involve personal, scientific interactions with HCPs.
Websites, Conferences, MSLs, and PowerPoint Decks are Key DA Tools
% Respondents
MOST UTILIZED DISEASE AWARENESS ACTIVITIES RANK 1 RANK 2 RANK 3
Unbranded website with disease information for HCPs & patients 53% 0% 7%
Power point deck for HCPs with disease state information (overview, description,
impact, prevalence)
20% 7% 0%
Disease state presentations or handouts at conferences and/or association
meetings
13% 27% 13%
Disease awareness documentaries 0% 13% 7%
Publications (advertorials, journal ads) 7% 7% 0%
Disease state presentations for HCPs at dinners or seminars 0% 13% 13%
Disease state information on advocacy group websites 0% 7% 13%
Disease awareness public relations campaigns 7% 0% 7%
MSL presentations to HCPs 0% 27% 33%
Other (Health policy events) 0% 0% 7%
Q.) Please indicate, in order, your three most heavily used disease awareness activities.

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N=16
Most participants rely on marketing as the principal funding source for disease awareness, although brand teams were the
funding source for almost half. This chart may be a picture of transition – some participants spoke of the increasing role of
medical in disease awareness and predicted DA will go the way of medical education with medical affairs being the
principal function behind both activities and funding in the coming years.
Marketing Remains Primary Contributor to Disease Awareness Budget
% Respondents
Q.) Which of the following functions provide funding for your Disease Awareness program? (Choose one for each)
64%
46%
36%
31%
17%
11%
36%
31%
18%
46%
25%
44%
23%
45%
23%
58%
Marketing
Brand/Product Teams
Company-wide business unit
Medical
Regional or country-specific business unit
Regional or country-level organization (e.g. U.S., Emerging
Markets, EU)
Location of Budget for DSA Programs
Primary Contributor Secondary Contributor Not a Contributor
44%

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While you can’t lump all of Europe together in terms of a regulatory approach, the UK is seen as especially sensitive to
promotional interpretations of disease state awareness information.
European Markets More Sensitive to Promotional Interpretations for DA
With Europe you have got to be more
general, for sure, and avoid anything
that would appear to be promotional in
any way, shape, or form. There’s a lot of
things, especially in the UK, that they
interpret as promotional. So it is just
one of those things you have got to
spend time on [regarding] ‘what do they
think of this?’
-Senior Director, Market Research
“
”

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Key Findings
Few of the key findings and insights that emerged from this study are listed below:
 No Single Structural Approach is Favored for Disease Awareness Programs: Participants aligned
equally with three structural approaches for disease state awareness programs: 35% centralized; 36%
hybrid; and 30% decentralized.
 Marketing Leads Disease Awareness Programs for Most but Shift is to Medical: While marketing
was the function that led disease awareness programs for the largest percentage of participants (61%),
medical was not far behind at 44%. In addition, several participants said in interviews that they expect
medical to eventually become the principal leader of disease awareness efforts. Regulatory and
compliance issues as well as the expertise of the medical function were cited as the leading reasons for
the shift. Medical education went through a similar leadership change (commercial to medical) during the
past 10 years.
 Marketing is Primary Contributor for Disease Awareness Programs: Most participants (64%) rely on
marketing as the principal funding source for disease awareness. Brand teams were second, with 46%
saying they were the primary contributor. As disease awareness leadership continues to move to
medical, the program funding will likely shift as well.
 Patient Advocacy Groups Seen as Valuable Partners: Almost 80% of study participants think it is
highly important to create alliances with patient advocacy groups. At the same time, a majority also felt it
is highly important to build relationships with key advocates and work on disease awareness
websites/campaigns for/with advocacy groups.

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