This report was developed for the Personalized Medicine Coalition to support the Education Initiative project. It provides a comprehensive overview of the online market for personalized medicine educational content, identifies market gaps, and focuses on the design of informative and value-generating analyses. The analyses performed were both internal and external focusing on membership development, member-based operating revenue streams, end-user analysis, and search engine optimization (SEO).
Applying Business Analytics & Strategy to Optimize Web-Based Educational Content: A Focus on Search Engine Optimization (SEO) & Impact
1. Personalized Medicine
Coalition
Applying Business Analytics & Strategy to Optimize Web-‐‑Based Educational
Content: A Focus on Search Engine Optimization (SEO) & Impact
Business Plan
Prepared April 2016
Contact Information
Brandon Lock
block@personalizedmedicinecoalition.org
703-895-9610
http://www.personalizedmedicinecoalition.org
1710 Rhode Island Ave. NW, Suite 700
Washington, DC 20036, United States
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Table of Contents
Executive Summary ..................................................................................................................... 1
Opportunity .......................................................................................................................... 1
Expectations .......................................................................................................................... 2
Statement of Problem ................................................................................................................. 3
Organization Description .................................................................................................. 3
Organization Strategy ........................................................................................................ 7
Statement of the Problem .................................................................................................. 8
Organization'ʹs Response to the Problem........................................................................ 9
Methodology & Reference ....................................................................................................... 10
Approach to the Problem ................................................................................................. 10
Organization, Web, & Member Analyses ..................................................................... 12
Web Development Strategy ............................................................................................ 15
Stakeholder Involvement ......................................................................................................... 17
Internal (Board & Staff) ................................................................................................... 17
External (Members) ........................................................................................................... 19
Data Analysis ............................................................................................................................. 20
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Demographics .................................................................................................................... 20
Finance ................................................................................................................................. 26
Surveys ................................................................................................................................ 27
Implementation Plan ................................................................................................................ 28
Next Steps ........................................................................................................................... 28
Evaluation Mechanism ............................................................................................................. 32
Partnership & Sponsorship ............................................................................................. 32
Google Analytics ............................................................................................................... 32
Conclusion .................................................................................................................................. 33
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Executive Summary
Opportunity
The Personalized Medicine Coalition team presented the Education Initiative Proposal
to the Board in November of 2015 with the vision of transforming the
organization'ʹs digital educational offerings into a carefully curated set of "ʺgo-‐‑
to"ʺ personalized medicine resources. The organization is strategically positioned to
become the leading provider of educational resources on personalized medicine
because it represents a diverse set of stakeholders across the healthcare landscape and
the mission of the organization emphasizes the value in educating the health care
workforce and patients about personalized medicine. While the organization’s mission,
project vision, and strategic position all provide the necessary foundation for
operationalizing this endeavor, the appropriate strategies and analyses required to
accomplish this task had not been fully developed and executed. In order to address
this organization-‐‑need a comprehensive project plan was developed to provide strategic
value and insight for determining the size, scope, and needs of the project. Best
practices in project planning were used to guide the implementation of the project and
to strategically maximize organization resources.
The project plan required extensive internal and external research in order to generate a
measurable view of the organization and to provide a framework for data-‐‑driven
decision-‐‑making. Seven individual analyses were performed including a membership
analysis, social media analysis, web user analysis, search engine optimization (SEO)
analysis, Google analytics, member webpage content analysis, and YouTube channel
analysis. These analyses provided the necessary data to understand the current
landscape for personalized medicine educational resources and to structure the current
educational resources in a measurable way that generates greater views and
interactions with organization content. Additionally, these analyses generated
significant insight on viewer, member, and organization dynamics that can be
leveraged and used to inform the functional areas of communications and membership
development.
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Expectations
Based on the project plan and informed by the various analyses, there are six primary
recommendations that should be considered in order to drive the Education Initiative
forward.
1. Dynamically Create & Curate Educational Content
2. Develop an Action Plan for Partnerships & Collaborations
3. Redesign the Project Ownership Structure
4. Solidify PMC'ʹs Web Development Strategy
5. Hire an Education-‐‑Focused FTE
6. Use Data in Decision-‐‑Making
There are 28 secondary recommendations contained within these six primary
recommendations that can be immediately acted upon by the functional areas of
communications, membership development, and business operations. Decisions should
be strategic and deliberate, informed by the data from the analyses and evaluated based
on the organization'ʹs resource capacity to accomplish the tasks with appropriate
understanding of project size and scope. The three major challenges for the Education
Initiative are going to be bringing in the right project management and web
development expertise, developing an action plan for dynamically sustaining and
maintaining educational web-‐‑based content if this becomes an active space, and
structuring project ownership.
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Statement of Problem
Organization Description
Background
The Personalized Medicine Coalition was launched in 2004 as an education and
advocacy organization to create a friendlier landscape for the investment in and
adoption of personalized medicine, and now comprises over 250 institutions from
across the healthcare spectrum.
Mission
The Personalized Medicine Coalition (PMC), representing innovators, scientists,
patients, providers and payers, promotes the understanding and adoption of
personalized medicine concepts, services and products to benefit patients and the
health system.
Recognizing that a paradigm shift in medicine will not happen just because the science
suggests it should, the Coalition’s members have identified key priorities in education
and advocacy, which include:
Education
• Educating the health care workforce and patients about personalized medicine’s
potential to improve health outcomes and lower costs.
• Educating policymakers about the potential of personalized medicine to improve
the effectiveness and efficiency of the health care system.
• Uncovering the challenges to the clinical adoption of personalized medicine and
outlining solutions to those challenges.
Advocacy
• Promoting public policies that encourage investment in personalized approaches
to care.
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• Devising a regulatory framework that accelerates the development of
personalized medicine products.
• Promoting reimbursement policies that will encourage the use of personalized
medicine products in practice.
Organization Structure
Figure can be found in Appendix 1.
Management Team
EDWARD ABRAHAMS, PH.D.
President
AMY M. MILLER, PH.D.
Executive Vice President
DARYL PRITCHARD, PH.D.
Vice President, Science Policy
MARY BORDONI
Director, Membership & Development
FASWILLA SAMPSON
Director, Operations & Secretary to the Board
CHRISTOPHER WELLS
Director, Communications
Board Structure
Graph can be found in Appendix 1.
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Board of Directors
AMY ABERNETHY, M.D., PH.D. (SECRETARY)
Chief Medical Officer & Senior Vice President of Oncology, Flatiron Health
EDWARD ABRAHAMS, PH.D. (PRESIDENT)
President, PMC
STEVEN D. AVERBUCH, M.D.
Vice President, Development, Oncology & Pharmacodiagnostics, Bristol-‐‑Myers
Squibb Company
PAUL R. BILLINGS, M.D., PH.D., F.A.C.P., F.A.C.M.G.
Chairman, Biological Dynamics, Inc.
NEIL DE CRESCENZO
President & CEO, Emdeon
DONNA R. CRYER, J.D.
President & CEO, Global Liver Institute
WILLIAM S. DALTON, PH.D., M.D. (CHAIR)
CEO, M2Gen Director, DeBartolo Family Personalized Medicine Institute
at Moffatt Cancer Center
STEPHEN L. ECK, M.D., PH.D. (VICE CHAIR)
Vice President, Oncology Medical Sciences, Astellas Pharma Global Development
TIMOTHY J. GARNETT, FRCOG, MFFP, FFPM
Senior Vice President & Chief Medical Officer, Medicines Development Unit & Lilly
Research Laboratories, Eli Lilly & Company
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JULIE K. GOONEWARDENE
Associate Vice Chancellor for Innovation and Strategic Investment, The University of
Texas System
MICHAEL KOLODZIEJ, M.D.
National Medical Director, Oncology Solutions, Aetna
HOWARD MCLEOD, PHARM.D.
Medical Director, DeBartolo Family Personalized Medicine Institute at Moffitt
Cancer Center
J. BRIAN MUNROE (PAST PRESIDENT & PAST CHAIR)
Senior Vice President, Government Affairs, Endo Pharmaceuticals
D. STAFFORD O'ʹKELLY (TREASURER)
Director, Helomics Corporation
MICHAEL J. PELLINI, M.D.
CEO, Foundation Medicine
KIMBERLY POPOVITS
Chairman of the Board, Chief Executive Officer & President, Genomic Health
LORI M. REILLY, ESQ.
Executive Vice President for Policy & Research, PhRMA
HAKAN SAKUL, PH.D.
Executive Director and Head of Diagnostics, Pfizer Inc.
JARED N. SCHWARTZ, M.D., PH.D.
Founder and President, Jared N. Schwartz, MD, PhD, LLC
MICHAEL J. VASCONCELLES, M.D.
Chief Medical Officer, Unum Therapeutics
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JAY G. WOHLGEMUTH, M.D.
Senior Vice President & Chief Healthcare Officer, HealthTap
Organization Strategy
The Personalized Medicine Coalition historically developed guiding strategic planning
documents in 2010, 2012, and most recently in 2015 for 2016-‐‑2017. This section will focus
on the goals, objectives, and strategies found within these plans as they relate to
the organization'ʹs education efforts. The reference documents can be found in Appendix
2.
2010 Strategic Plan
The goals of the 2010 strategic plan were to continue to build PMC'ʹs position as the
preeminent public policy, education and advocacy group in personalized medicine,
raise the profile of personalized medicine and sustain the credibility and visibility of
PMC in the media, and to increase membership. To accomplish these goals the
organization would focus on board-‐‑defined strategic imperatives by educating key
constituencies and amplifying impact through thought leadership and media visibility.
Internal efforts would include broadening PMC'ʹs impact via partnerships and through
collaboration with academic, policy, and commercial organizations with similar
interests; integrating policy, education, and media programs to maximize impact; and
leveraging resources through sponsorships from constituencies with a common
interest.
2012 Strategic Plan
The 2012 strategic plan was the first articulation of an organization vision for the field of
personalized medicine with mention of educational opportunities in personalized
medicine. This plan established priorities to accelerate the evolution of personalized
medicine such as helping to build a personalized medicine informed workforce by
educating providers. Notably this plan did not build upon the previous goals set in the
2010 strategic plan regarding educational efforts.
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2014 Membership Development & Communications Plans
It is important to note that 2014 membership development and communications
planning documents were found for 2015, however these were not comprehensive and
reflective of the entire organization'ʹs strategy. These sub-‐‑planning documents referred
to organization priorities such as educating and building a personalized medicine-‐‑
informed ecosystem and mentioned developing initiatives to integrate personalized
medicine into health care and becoming a focal point for education resources. An
important observation was that the education/communications strategy in these sub-‐‑
planning documents became the foundation of the 2016-‐‑2017 strategic plan and was the
first indicator of developing digital-‐‑based resources to enhance PMC'ʹs outreach and
impact, including an enhanced website, topical one-‐‑pagers, and curating content of
educational resources developed by members.
2016-‐‑2017 Strategic Plan
The latest iteration of strategic planning occurred in 2015 with the development of
a strategic plan for 2016-‐‑2017, which is the most recent organization-‐‑wide
strategic planning document. This plan built off previous planning efforts and
included several funding proposals. The major education funding proposal was to
launch a project to transform the educational section of PMC'ʹs website into a carefully
curated, leading personalized medicine resource that can be updated in real time and
would expand the educational resources on PMC'ʹs website.
Statement of the Problem
The 2015 education funding proposal, Education Initiative, has the appropriate
foundation to become operational and move from concept to reality, however a robust
action plan is needed to do this in an environment of constrained and limited resources.
Upon further review, the initial project plan did not have the appropriate strategies
and necessary analyses in place to accomplish this task. This problem was further
compounded by having a dual ownership structure of the project without having a
single project manager responsible for working across the dual functional groups and
having the authority to enact change when necessary to accomplish the project.
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Organization's Response to the Problem
Education Initiative Background
The Personalized Medicine Coalition is uniquely positioned to be a leader in the area of
personalized medicine education and this opportunity was identified and prioritized in
the 2010 strategic plan, where PMC set the goal of becoming a media-‐‑visible thought
leader on personalized medicine. The vision of this opportunity evolved in the 2012
strategic plan with the recognition that the healthcare workforce needed to become
more informed on personalized medicine. The strategy for operationalizing
this articulated goal and vision emerged in the 2014 membership development and
communications planning documents, but did not fully surface and become
concrete until the 2016-‐‑2017 strategic plan with a funding proposal to launch the
Education Initiative.
The Education Initiative received board and staff support during the November 2015
board meeting and various planning documents were created to support the
proposal. The objective of the initiative is to expand PMC'ʹs online educational portal to
provide a foundational understanding of personalized medicine tests and principles
among influential stakeholders by becoming the "ʺgo-‐‑to"ʺ source of personalized
medicine information. The project outline approximates that 40% of the project
will involve information collection, curation and annotation of short descriptions; 30%
will involve website development; and 30% will involve graphic design.
Project Planning Documents
The project proposal, work plan, and landing page reference documents can be found in
Appendix 3.
Project Proposal
The deliverables outlined in the project proposal include producing original content for
online publication, identifying a mechanism for continuous expansion of the
educational materials, and the development of an outline for the expanded online
content and its framework.
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Work Plan
The objective is to build out the current education web page to include four new
sections, including: The Basics of Personalized Medicine, Categories of Diagnostic Tests,
Testing Technologies, and Applications and Examples. To accomplish this PMC needs
to develop and build out the current framework; annotate subject headings, sub-‐‑
headings, and links; review and curate links to high-‐‑quality 3rd party online
information; identify appropriate 3rd party content (reports, infographics, video,
presentations, etc.) and obtain permission for modification of materials as appropriate,
and adapt materials for use on PMC’s website; add relevant PMC-‐‑developed
information to appropriate areas online; and build out the test site and subsequently
publish the page.
Landing Page
The initial landing page would include the new sections as drop-‐‑down links on the left
side of the page as well as selectable visual boxes in the center column of the website.
These visual boxes would include bulleted subcategories to provide information to
web-‐‑users visiting the site.
Methodology & Reference
Approach to the Problem
The Education Initiative, as previously indicated, has the necessary foundation to begin
development and PMC is uniquely positioned to fill this educational gap in the
marketplace. However, following the project briefing it became immediately apparent
that the organization had not performed the necessary background research, analyses,
and project planning required for executing a project of this size and scope. Outside of
the project size and scope, there were significant capital challenges present by having an
operating environment with limited financial resources and not having readily
available experts in web development and project planning in-‐‑house. An additional
systemic challenge emerged due to the ownership structure of the project, which
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required that the project manager work collaboratively across the internal functional
areas of science policy, communications, and membership development.
Objective 1
The first set of immediately actionable tasks were to define the problem, evaluate the
organization'ʹs response to the problem, and identify project challenges and operating
limitations. Accomplishing these first tasks provided a measurable understanding of
the nature of the problem.
Objective 2
The second set of immediately actionable tasks were to review the organization'ʹs
mission, vision, strategic planning documents, and board meeting minute documents.
These reference documents provided the necessary background information to align the
project with the organization'ʹs strategic plan and to maximize the project'ʹs impact
for meeting the goals and objectives of the functional-‐‑areas involved in the project.
Objective 3
The third set of actionable tasks were to use the information gathered from Objectives 1
and 2 to determine what background research and analyses were necessary to inform
the project'ʹs direction. Once a list of background research and analyses were identified,
they were evaluated and selected based on their ability to be accomplished with respect
to project challenges and organization capacity.
Objective 4
The fourth set of actionable tasks were to complete the three selected primary analyses:
organization analysis, web analysis, and member content analysis. An outline was
developed and seven secondary analyses were identified as necessary and critical to
accomplish the three primary analyses.
Objective 5
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The fifth and final set of actionable tasks were to synthesize the information generated
from the Objective 4 analyses and provide recommendations for implementation,
evaluation, and impact.
Organization, Web, & Member Analyses
Organization Analysis
The organization analysis, which includes a membership analysis and social media
analysis, was conducted to quantitatively and qualitatively measure and evaluate the
Personalized Medicine Coalition'ʹs operations as it relates to the Education Initiative.
The analyses include a blend of PMC-‐‑generated and indivdually generaed datasets and
graphs. The data and graphs for the analyses can be found in Appendix 4.
Membership Analysis
The membership analysis was performed using data from PMC'ʹs Customer
Relationship Management (CRM) solution "ʺYour Membership"ʺ and PMC'ʹs data and
graphs used for internal reporting. The analysis looked at historic membership trends
(2006-‐‑2015), membership trends by category (2013-‐‑2015), membership gain/loss by
category (2013-‐‑2015), revenue trends by category (2013-‐‑2015), membership non-‐‑renewal
by category (2013-‐‑2015), membership non-‐‑renewal by reason (2013-‐‑2015). There were
some limitations in the data quality and data structure, which could be attributed to
variance in reporting by organization staff and members. PMC'ʹs annual
internal membership numbers by category were cross-‐‑referenced with membership
sheets for the corresponding year and were mapped to the annual November board
meeting membership sheets in order to maintain consistency and for quality assurance.
If a member was unlisted or unidentifiable by category, the member was labeled
"ʺuncategorized"ʺ and included in the analysis as such.
Social Media Analysis
The social media analysis was conducted using data from https://foller.me a free twitter
analytics tool that enables quick statistics on any twitter user. This provides an
overview of topics, hashtags (#), and mentions analysis and was performed for the
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@permedcoalition account. There were limitations in the quantitative data generated
from the freeware and this tool better serves as a proxy measure of qualitative
interactions of the account.
Web Analysis
The web analysis, which includes a web-‐‑user analysis, search engine optimization
(SEO) analysis, and google analytics overview, was performed to identify current
browser statistics, search engine next-‐‑word correlation, google trends on personalized
and precision medicine, top metatags for SEO, and for benchmarking PMC'ʹs current
website traffic and activity. The data and graphs for the analysis can be found in
Appendix 5.
Web User Analysis
A web-‐‑user analysis was performed using data from http://w3school.com to identify
and measure the user-‐‑base of the top 5 web browsers and the top 3 search engines as
of February 2016. The web browsers and search engines with the highest user-‐‑
base were then selected for the analysis. The search engines Google, Bing, and Yahoo
were used to compare the terms "ʺPersonalized Medicine"ʺ and "ʺPrecision Medicine"ʺ for
number of hits or information sources and next search word correlation. Google Trends
was used to compare the activity of these terms on google searches for web, images,
news, and YouTube from 2009-‐‑2016.
Search Engine Optimization (SEO) Analysis
A SEO analysis was performed by clearing previous browser history and settings to
create a blank search environment to compare the search terms "ʺPersonalized Medicine"ʺ
and "ʺPrecision Medicine"ʺ. These terms were then searched using Google, Bing, and
Yahoo and the top 10 links for each engine were ranked and downloaded to a database.
Ad-‐‑related links were excluded from the analysis. The source-‐‑code for all the
downloaded links was examined for title, metatag, H(n)s, and key search terms and
were mapped in a datasheet. There were limitations for various links depending on the
nature of the content, parsing restrictions of protected information from the source
code, and programming language used for the host-‐‑link webpage.
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Google Analytics
Google analytics provides an excellent platform for understanding PMC'ʹs end web-‐‑
user. PMC'ʹs analytics profile has been active since April of 2014 and a comprehensive
analytic report was generated covering the entire lifespan of the service. Specific metrics
observed were the active user profile (1 day, 7 day, 14 day, and 30 day), user flow
(starting page, 1st interaction, 2nd interaction, etc.), user device (desktop, mobile, or
tablet), user browser and operating system, and user viewing language. This provides
real-‐‑time information relevant for designing and architecting PMC'ʹs website to best
meet current user-‐‑needs.
Member Content Analysis
A member content analysis, which includes a member webpage content analysis and
YouTube member channel analysis, was performed to identify educational content on
PMC member websites and to understand the size and scope of video educational
content on publicly accessible resources such as YouTube. The data and graphs for the
analyses can be found in Appendix 6.
Member Webpage Content Analysis
The member webpage analysis was structured around the Education Initiative project
work plan categories and sub-‐‑categories for the proposed sections of The Basics,
Categories of Diagnostics, Testing Technologies, and Applications & Examples. This
resulted in approximately 27 category types mappable to educational content on
member websites. PMC provided an initial set of links containing approximately 22-‐‑
member site links and 19 non-‐‑member links with general comments. This provided
a template for designing the content capture and curation process. A database
of measurable categories was then built out to include the type of content, content
description, content link, source, type of source, source link, and comments. The
analysis was then performed by searching the available websites of over 250 members
listed on the February 2016 PMC Membership List. Member content containing any of
the 27 mappable category types was included and listed in the content database. There
were limitations due to the structure of member content and mappability of content to
PMC desired categories.
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YouTube Member Channel Analysis
The YouTube member channel analysis was informed by the Google Trends on
personalized and precision medicine indicating significant YouTube activity in
2016. The analysis was then performed by searching YouTube for channels of
members listed on the February 2016 PMC Membership List. A database was created
listing all member channels by category, channel link, # of videos, and # of subscribers.
The top 25 member channels were determined by # of videos and # of subscribers.
Additional graphs were generated identifying the % of members with YouTube
channels, the total # of videos by category, the total # of subscribers by category, and the
subscription rate per video (subscriber). There were limitations in the quality of the
YouTube data with various member channels not listing the # of videos and/or # of
subscribers. Additionally, this analysis does not provide information on the length of
time of individual videos, the # of views of videos, or the description/type of content of
the videos.
Web Development Strategy
Search Engine Optimization (SEO)
According to Google'ʹs Search Engine Optimization (SEO) starter guide, SEO is about
making small modifications to parts of a website which might seem incremental, but
when combined with other optimizations can have a noticeable impact on site user
experience and performance in organic search results. When optimizing webpages it
is important to include titles by using title tags, placed within the <head> tag of the
HTML, which tell both users and search engines what the topic of a particular page is.
An additional best practice is to accurately describe page content by creating
brief descriptive titles and providing a brief summary of the page description with a
<meta name = "ʺdescription="ʺ content ="ʺ..."ʺ. While title tags and descriptions are key for
optimization, site navigation is equally as important and this should be done based on
user flow from the home "ʺroot"ʺ landing page. To optimize user flow, the architectural
blueprint or sitemap should be created for both users and search engines. Google
provides an open source Sitemap Generator Script allowing web developers to
create sitemap files for a website. When considering a strategy for content development,
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web developers should anticipate differences in users'ʹ understanding of topics and
include a good mix of keyword phrases to produce positive search results. Google
AdWords provides a handy Keyword Tool that helps developers discover new
keyword variations and approximate search volumes for each keyword.
Reference:http://static.googleusercontent.com/media/www.google.com/en//webmasters/docs/sea
rch-‐‑engine-‐‑optimization-‐‑starter-‐‑guide.pdf
Content Management Solution (CMS)
Datanyze is a sales intelligence platform powered by technology data that provides a
real time overview of software market share. This publicly available tool was used to
determine the Content Management Solution (CMS) market share. The Personalized
Medicine Coalition currently uses the Adobe ColdFusion CMS platform which ranks
8th in US market share making up less than 3.8% of the total market. The leading CMS
platforms are WorPress.org (49.2%), WordPress.com (10%), Blogger (7.6%), WebSite
Tonight (5.3%), and Wix (3.8%). Selecting an appropriate CMS to meet the business
needs and requirements of an organization should be regularly evaluated and
considered in this dynamic market with respect to the organization'ʹs financial and
information technology capabilities.
Reference: https://www.datanyze.com/market-‐‑share/
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Stakeholder Involvement
Internal (Board & Staff)
A review of the Board Meeting Minutes for November (2012-‐‑2015) was conducted to
serve as an approximate measure of internal stakeholder involvement in the design and
implementation of the Education Initiative. Reference documents for the meeting
minutes can be found in Appendix 7.
2012
During the 2012 board meeting a significant minority of board members expressed that
PMC'ʹs priority should focus on educating patients, providers, and policymakers on the
value of personalizing medicine. This was a critical meeting where staff announced
the culmination of rebranding efforts with the design of a new logo, website, and
launch of an annual report. In regards to membership development, the board
suggested that staff begin conducting exit interviews or surveys when members do not
renew their membership. In regard to education efforts, the staff proposed launching
an off-‐‑budget educational campaign to reach new audiences.
2013
During the 2013 board meeting it was announced that PMC was well positioned to
become more aggressive in its education and advocacy efforts. This was a critical
meeting for membership development, where staff announced the creation of an online
member community to enhance members'ʹ value in PMC by giving them the ability to
communicate with each other directly, share documents, and enjoy members-‐‑only
content. Additionally, the board made the request for deeper membership analytics
focusing on specific disproportions within the different stakeholder types. In regards to
communication, staff announced the development of a PMC communications
committee to assist with branding and marketing efforts.
2014
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The 2014 board meeting is the first to have a core focus on education by
specifically stating that PMC is uniquely situated to be a leader in personalized
medicine education and awareness. The board opened the meeting with remarks on
this need to educate all stakeholders regarding the purpose and power of personalized
medicine. During the review of PMC'ʹs five-‐‑point plan for 2014, the staff showcased
the hiring of a Vice President of Science Policy to lead aggressive programming and
advocacy efforts in managing an "ʺEducation Initiative"ʺ that focuses on the integration of
personalized medicine into health care and makes PMC a focal point for resources on
personalized medicine. The vision for this project would involve developing an online
educational resource, developed with educational partners, which can be used by
decision-‐‑makers, patients, and all stakeholders as a definitive source of personalized
medicine information and education. The meeting closed with an
communications update, stating that in early 2015 PMC would start building the online
educational materials.
2015
The 2015 board meeting showed similar trends in the board'ʹs thoughts and suggestions
for PMC'ʹs education efforts. In regards to membership development, further analysis of
non-‐‑renewing members was presented at the request of the board. In regards to
communications, staff reported that PMC uses information and analysis to drive the
personalized medicine conversation forward and create opportunities. Specific metrics
referenced were the 10,704 digital downloads of PMC materials and launch of 2
organization-‐‑affiliated Twitter accounts. Additionally, there was direct reference
to, "ʺCapitalizing on the Coalition'ʹs unique role to fill strategic knowledge gaps."ʺ In
regard to the Education Initiative, staff put forth a funding proposal and provided an
update that PMC educational materials are available on the website that include the
appendix of available personalized medicine products. The board supported the
funding proposal and encouraged the consideration of search engine optimization
when designing pages.
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External (Members)
Interaction with the Personalized Medicine Coalition'ʹs members at this stage in the
Education Initiative has been limited. However, valuable partnership opportunities to
develop, repurpose, and reuse member content have been presented and there is
significant opportunity to incorporate these content offerings in a piece-‐‑meal way into
the design and development of PMC'ʹs website and educational materials.
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Data Analysis
Demographics
Organization Analysis
The detailed graphs and datasets associated with this analysis can be found in Appendix
4.
Membership Analysis
The high-‐‑level membership data indicates that the Personalized Medicine Coalition has
consistently increased its total membership, decreased its number of non-‐‑renewing
members, and increased its number of renewing members. The 2006-‐‑2015 range for new
members was 31 to 59, with consistent new member growth hovering around the range
of 47-‐‑53 for 2013-‐‑2015.
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The membership trends by category for (2013-‐‑2015) indicate that diagnostic companies,
research education and clinical care institutions, and strategic partners make up the
largest number of coalition members. An interesting trend is that the diagnostic
companies category, while making up a large portion of the coalition'ʹs membership, has
the largest membership drop since 2013. The categories of clinical laboratory testing
services, IT/Informatics companies, large biotech/pharmaceutical companies, patient
advocacy groups, personalized medicine service providers, research education and
clinical care institutions, and strategic partners have all increased in membership in
2015 from 2013. The categories of emerging biotech/pharmaceutical companies, health
insurance companies, industry and trade associations, research tool companies, and
venture capital have decreased in membership in 2015 from 2013.
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A dashboard of the membership data was generated in excel and the % change in
membership by category for 2013-‐‑2015 was calculated and visualized. This provided
observable numbers associated with PMC'ʹs membership profile (e.g. diagnostic
companies making up 17.77% of total membership in 2015).
A financial analysis was performed using historical membership dues data to determine
revenue trends by category for 2013-‐‑2015. The top 3 revenue generating categories as a
% of all member revenue were large biotech/pharmaceutical companies, diagnostic
companies, and research education and clinical care institutions.
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The previously conducted PMC analyses for membership non-‐‑renewal by stakeholder
type (2013-‐‑2015) and membership non-‐‑renewal by reason (2013-‐‑2015) were used and
referenced to provide graphical overlay and to provide insight when comparing trends
in membership by revenue and trends in membership by category. The top 3 non-‐‑
renewing member groups for 2013-‐‑2015 by stake holder type were strategic partners,
research education and clinical care institutions, and diagnostic companies. The top
non-‐‑renewal reason was unknown, however financial considerations were the 2nd
highest. Additional reasons include participation, content, and loss of main contact.
Social Media Analysis
The social media analysis provided an interactive overview of the PMC Twitter
accounts focusing on topics, # Hashtags, and @ Mentions. The leading topics PMC
interacted with were drugs, cancer, approved, genetic, analysis, PMC, clinical, panel,
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patients, and policy. The most popular # hashtags were #personalizedmedicine,
#precisionmedicine, #cancermoonshot, #personalizemedicines, #precisiontrials, and
#precisionFDA. The most popular @ Mentions involved the FDA, Pfizer, ACLA,
PhRMA, Oracle, AACR, HBS, GSK, Amgen, Humana, Illumina, Francis Collins, AMA,
NextGxDx, and many others.
Web Analysis
The graphs and datasets associated with this analysis can be found in Appendix 5.
Web User Analysis
This analysis provided a breakdown of internet-‐‑wide user-‐‑browser statistics as of
February 2016, with Chrome leading the market at 69% of the user-‐‑base and Firefox
holding 18.6% of the user-‐‑base. The second part of this analysis compared the key terms
"ʺPersonalized Medicine"ʺ and "ʺPrecision Medicine"ʺ across the top search engines Google,
Bing, and Yahoo. The term "ʺPrecision Medicine"ʺ outperformed "ʺPersonalized
Medicine,"ʺ overall by having the highest number of hits at ~131,000,000 on Google.
Comparatively the term "ʺPersonalized Medicine"ʺ only showed ~15,500,000 hits on
Google. Yahoo and Bing showed fewer hits then Google for both terms. The third part
of the analysis looked at next search word correlation by search engine. Key search
terms following personalized medicine for all search engines were: coalition, world
conference, initiative, companies, journal, in oncology, genetic testing, genomics, ethics,
and state law. Key search terms for all search engines following precision medicine
were: white house, Obama, FDA, initiative, conference, and cancer, clinical trials,
genetics, journal, definition, initiative cohort program, and initiative summit. The final
part of the analysis looked at Google Trends for the two search terms compared by web,
image, news, and YouTube activity. Interesting trends are an observable spike in web
searches for precision medicine that outperforms personalized medicine at the
beginning of 2015, a spike in both personalized and precision medicine images in 2016,
and a spike in precision medicine YouTube videos in 2016.
Search Engine Optimization (SEO) Analysis
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This analysis was performed to identify the top links related to personalized medicine
and precision medicine by search engine to determine where the Personalized Medicine
Coalition ranks and what webpage source tags are being used by the top ranked links.
Analysis of the top personalized medicine links showed PMC'ʹs website ranking 2nd on
Google and Yahoo and 3rd on Bing. The PMC website did not populate in the top 10
search for precision medicine. Notable sites that populated for both searches include
Wikipedia links, government agency links (FDA, NIH, Whitehouse, and CDC),
academic journals (NEJM and Genome Magazine), and popular news sites (US News
and Scientific American). A dataset was generated to catalogue the title, meta, and H(n)
tags for the source code, if it was available, for the top ranked links. The key terms
derived from the source code for both personalized and precision medicine were:
personalized medicine, precision medicine, pharmacogenomics, bench-‐‑to-‐‑bedside,
genetic, genome, genomic, genomic profile, medicine, and precision medicine clinical
trials.
Google Analytics
This analysis focused on interpreting the Google Analytics data from April 1, 2014 to
April 17, 2016. The data indicates that the largest group of users tends to be 30 day
active users (3,269), the majority of users (87.45%) are viewing the PMC website from a
desktop compared to the (12.55%) of users who are viewing from mobile/tablet. The
most active browsers for PMC viewers are Chrome (46.82%), Internet Explorer (17.85%),
Safari (16.92%), and Firefox (15.73%). The dominant user/viewer language is in US
English (77.76%). The main webpage viewed is the home landing page (44,000 views)
and the lowest viewing currently is resources (3,000) when studying user flow on the
website.
Member Content Analysis
The graphs and datasets associated with this analysis can be found in Appendix 6.
Member Webpage Content Analysis
This analysis was performed in order to create a searchable database of relevant
member content links to be curated, evaluated, and considered for inclusion in the
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education section of PMC'ʹs website. Member website were analyzed for content
mapped to the 27 category inclusion areas and over 250 links were identified and
tagged. The highest number of link generating content categories were text (62),
databases (40), publication lists (35), infographics (24), videos (20), applications and
examples (18), education modules (17). There were approximately 15 different types of
content and this provides a substantial view of the current content offering landscape in
the personalized medicine field.
YouTube Member Channel Analysis
This analysis was performed due to the high spike in YouTube videos in 2016 for
personalized and precision medicine as indicated by Google Trends. The data showed
that the top 3 members by # of videos were Illumina, Siemens Healthcare Diagnostics,
and Mayo Clinic. The top 3 members by # of subscribers were Intel, Siemens Healthcare
Diagnostics, and Mayo Clinic. The top 3 members with YouTube channels by category
are health insurance companies, large biotech/pharmaceutical companies, and research
tool companies. The bottom 3 categories having the fewest members with YouTube
channels were emerging biotech/pharmaceutical companies, strategic partners, and
venture capital. One observation was the number of videos research education and
clinical care institutions (23,175 videos) had compared to the other leading member
categories such as strategic partners (4,936 videos) and diagnostic companies (6,761
videos). A second observation was the total number of subscriber’s IT/Informatics
companies had (242,879 subscribers) compared to the next highest member category
research education and clinical care institutions (111,086 subscribers) and diagnostic
companies (52,846 subscribers).
Finance
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Surveys
National Awareness of Personalized Medicine
In March of 2014, PMC commissioned a nationally representative survey of U.S. adults
to gauge consumer awareness, knowledge, and attitudes about personalized medicine.
The survey suggested that Americans want to learn more about personalized medicine
and are supportive of the concept. It also uncovered key consumer questions about
personalized medicine, shed light on interest in diagnostics for prevention and
treatment, and revealed concerns around high out-‐‑of-‐‑pocket costs. The survey results
were officially launched at the National Press Club in Washington, D.C. on July 22,
2014.
Findings indicated that general public understanding of this emerging field is low but
interest is high:
• 62% have not heard of personalized medicine but the majority 65% reacts
positively when it is described to them and 69% are interested in learning more.
• 76% say that major benefits are that the information gained could help them and
their doctors choose a treatment that is most likely to be effective for them and
72% says this gives them more control to prevent or treat illness.
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• ~80% would have a diagnostic test for the purposes of personalizing prevention
or treatment if their doctor recommended it.
• 63% immediately see the value of these emerging technologies and believe that
personalized tests and treatments should be covered by insurance.
Survey documents can be found in Appendix 8.
PMC Membership Survey 2014
In 2014 PMC conducted an internal member survey to assess the current value offering
to members and the impact of organization programming. The survey asked questions
regarding which PMC activities are members currently participating in such as the
virtual member community and communications committee; which PMC publications
are you reading such as the member update; how would you like to learn about PMC
activities such as website or email; and which of PMC’s policy advocacy initiatives are
most important to the organization you represent such as regulation, reimbursement,
and health information technology.
Survey documents can be found in Appendix 8.
Implementation Plan
Next Steps
Dynamically Create & Curate Educational Content
• Focus on board priorities such as educating the healthcare workforce and
patients by providing materials the enable a foundational understanding of tests
and principles.
• Focus on member survey results for topics of interest based on the survey such
as regulation, reimbursement, and incentives for personalized medicine.
• Review the links in the member webpage content analysis database and
YouTube channel analysis database. Continue to review new member websites
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and catalogue relevant content in the member webpage content analysis
database.
• Consider partnering with a team of undergraduate level student interns to help
filter the massive amount of educational content data informed by the strategic
analyses.
• Use a datamining software tool such as Import.IO to dynamically find relevant
content informed by the member webpage content analysis.
Develop Action Plan for Partnership & Collaborations
• Develop an action plan to strategically target partnerships and collaborations
with academic, policy and commercial organizations informed by the
membership analysis.
• Determine educational content gaps that PMC can fill based on the member
webpage content analysis.
• Target research education and clinical care institutions, diagnostic companies,
and strategic partners. Potentially focus on research education and clinical care
institutions due to the large proportion of PMC’s revenue stream.
• Target personalized medicine service providers and IT/Informatics due to the
large proportion of YouTube videos.
• Focus on current and target members having the highest volume of educational
content (videos, subscribers, and links).
Redesign Project Ownership Structure
• Strategically leverage the Education Initiative to meet the needs and objectives of
the Communications, Science Policy, and Membership Development functional
groups.
• Consider shifting the Project Management role to the new to-‐‑be-‐‑hired
Membership & Development Coordinator.
• The VP of Science Policy should focus on developing original content,
identifying topics for inclusion in background research (e.g. Pharmacogenomics),
and assessing the validity and accuracy of content.
• The Director of Communications should focus on translating and crafting the
technical content, post curation and review, for a public audience and publish to
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the website. Additionally, the Director of Communications should work with the
Director of Business Development to map content partnership opportunities to
annual target membership.
• The Director of Business Development should work with the Director of
Communications to focus the content messaging on target members and to build
the business case to those members to drive renewing membership up and
decrease the annual rate of non-‐‑renewing members.
Solidify PMC’s Web Development Strategy
• Compare browser statistics and google trends with current web viewer browser
(Chrome & Internet Explorer).
• Use next-‐‑word search correlation analysis to design the website.
• Use Google AdWords and Google Sitemap to determine popular and relevant
annotations when developing the website and overlay with the meta-‐‑tags and
keywords derived from the Search Engine Analysis (SEO).
• Include “Precision Medicine” keywords into site architecture and source code
making the PMC website searchable and populating for this high-‐‑volume term.
• Optimize website for mobile and tablet viewers (14% of viewer base).
Hire Education-‐‑Focused FTE
• Consider on-‐‑boarding a new staff member capable of working across functional
groups with expertise in project manage to leverage and manage the investment
in the Educational Initiative.
• Consider developing an on-‐‑budget educational campaign and build this into the
FTE role that works with membership development, science policy, and
communications.
• Consider bringing IT expertise in-‐‑house, if web-‐‑based educational content
becomes a lead-‐‑generating staple of PMC’s portfolio.
• Consider increasing the responsibilities and requirements for the new to-‐‑be-‐‑hired
Membership & Development Coordinator.
Use Data in Decision Making
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• Review all analyses for greater insight and assess strategic value.
• Consider conducting new analyses based on generated insight or building
analyses out further.
• Use twitter analytic tools to determine the impact of the PMC Twitter accounts.
• Use analyses to inform the board on disproportions by stakeholders and provide
greater insight when conducting strategic planning and developing annual target
membership.
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Evaluation Mechanism
Partnership & Sponsorship
The primary evaluation mechanism for measuring the success of the Education
Initiative will be the number, type, and amount of partnership and sponsorship
opportunities facilitated and achieved through this project. The analyses performed
provide a strategic vantage point to pitch the business case to PMC members who
own highly relevant educational materials and to target potential partners based on
PMC'ʹs informed understanding of the market landscape and unique position to meet
that market need. Membership engagement can be further measured and evaluated by
conducting a survey similar to the 2014 PMC member survey, integrating a feedback
mechanism into member non-‐‑renewal, and observing the increase/decrease of member
non-‐‑renewal due to educational content. Partnership and Sponsorship opportunities
can be evaluated from a financial perspective, by amount contributed in the form of
unrestricted or education restricted grant funding, or from a content perspective, by the
use of educational materials re-‐‑branded for PMC web deployment.
Google Analytics
Google Analytics offers a powerful platform to analyze viewer information by viewing
device (desktop, mobile, or tablet), browser, language, session length, and tracking
of user flow within the website. As educational material is curated, vetted, and
published onto the live site this can be measured on the back-‐‑end using the Google
Analytics platform. Over time this will provide a benchmark to evaluate the impact of
educational materials by viewing the user-‐‑flow rate, number of new and continual
users, and the viewing platform of viewers. This information will provide valuable
insight based on quantitative results and will provide a visual story regarding the
impact of adding relevant keywords to the PMC source code, informed by the SEO
strategy and educational materials published.
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Conclusion
The Personalized Medicine Coalition has an incredible opportunity to take advantage of
the current gap in online educational materials with the launch of the Education
Initiative. With a comprehensive project plan developed and the necessary background
research and analyses performed, the organization should now have a more complete
understanding of the size and scope of this caliber of a project. While there is great
opportunity there is also great challenge and continuous assessment of risk and
financial position should be evaluated as the project moves forward. The organization'ʹs
current lean operating structure requires decision-‐‑makers to be very strategic about the
type of content originally generated and the question of value should always be at the
forefront. If the proposed evaluation mechanisms indicate that providing online
educational resources is impactful and of significant value, it is highly recommended
that the organization consider hiring, contracting, or bringing on a full-‐‑time project
management expert with web development and search engine optimization (SEO)
expertise.