Patient Advocacy Internal Collaboration to Raise Awareness, Guide Research, and Improve Access

While the Advocacy Teams with many biopharma organizations often lead or support these efforts, numerous challenges around internal coordination can undermine a company's effectiveness in delivering high, consistent value in the patient sphere.

Best Practices, LLC undertook this benchmarking research to investigate the ideal role that Patient Advocacy teams can play in internal coordination, critical influence points, and shared decision making. This report examines how biopharma companies’ Advocacy Teams work to improve coordination efforts with internal groups such as Marketing, Medical Affairs, R&D, and Government Affairs.

Our report also delivers benchmarks and insights around the mechanics of partnerships with patient advocacy groups, R&D partnerships with advocacy groups, and improving disease awareness through patient advocacy partnerships. This report will help companies form a shared road map to allow Advocacy Team leaders to fulfill patient-centric objectives and better serve external patient advocacy groups.

Study Snapshot

Best Practices, LLC engaged 54 leaders from 44 leading biopharma organizations in this research through a benchmarking survey. Deep-dive interviews were conducted with select few participants to provide further insight. More than 80% of benchmark participants serve at Director / Head level and above. Insights in this research are segmented by company size (mid vs. large pharma) and reporting structure of patient advocacy teams to offer multiple relevant lenses on strong performance.

Key topics covered in this report include:

• Mechanics of Partnerships with Patient Advocacy Groups
• R&D Partnerships with Patient Advocacy Groups
• Transforming Policy and Access with Patient Advocacy Groups
• Improving Health and Disease Awareness with Patient Advocacy Groups
• Leveraging Telehealth to Improve Patient Centricity
• Best Practices in Leveraging Internal Patient Advocacy Interactions

• Disease Awareness Coordination: Marketing (88%), Medical (85%), and Communications (83%) are the groups most often tasked with coordinating on disease awareness program generation.

• Telehealth Opportunities: 67% of advocacy teams reported they are developing new ways to enhance the patient experience with telehealth.

Sr. No.	Topic	Slide No.
I.	Introduction: Study Objectives, Methodology, and Topics	Pg. 4
II.	Executive Summary	Pg. 5
III.	Benchmark Class, Segmentations, and Demographics	Pg. 6
IV.	Mechanics of Partnerships	Pg. 11
	Proposal Submission Difficulty	Pg. 13
	Vertical and Horizontal Reporting	Pg. 16
	Activities to Build PAG Relationships	Pg. 20
	Patient Journey Involvement and Pandemic Challenges	Pg. 21
V.	Improving Disease Awareness	Pg. 24
	Disease Awareness Coordination and Budget Location	Pg. 25
	Disease Awareness Digital Tools and Telehealth	Pg. 29
VI.	R&D Partnerships	Pg. 33
	Advocacy Influence on R&D	Pg. 34
	Advocacy Role in R&D	Pg. 38
	Advocacy Data Types Collected for R&D	Pg. 39
VII.	Policy and Access Partnerships	Pg. 42
	Legal and Compliance Involvement in Advocacy Activities	Pg. 43
	Partnerships with Government Affairs	Pg. 46
	Transparency of Financial Partnerships	Pg. 49

• The goals of Advocacy’s internal partnerships

• Overall difficulty, in terms of time and effort necessary to complete, for submitting proposals for partnerships with patient advocacy groups; and Reasons for difficulty – Total benchmark class
• Overall difficulty, in terms of time and effort necessary to complete, for submitting proposals for partnerships with patient advocacy groups – Large pharma vs. mid pharma segment
• Overall difficulty, in terms of time and effort necessary to complete, for submitting proposals for partnerships with patient advocacy groups – Budget location segments (Commercial, Medical Affairs, Corporate Affairs and C-Suite)

• Vertical reporting structure of patient advocacy functions – Total benchmark class
• Vertical reporting structure of patient advocacy functions – Large pharma vs. mid pharma segment
• Horizontal reporting structure of patient advocacy functions

• Effectiveness of various activities designed to help advocacy teams coordinate their relationships with patient advocacy groups

• Lead / support role of patient advocacy teams in activities throughout the patient journey
• Benchmark partner’s recent success story that arose from collaborating internally with another function around patient advocacy to impact the lives of patients
• Benchmark partners’ narratives around adapting to the challenges posed by the COVID-19 pandemic

• Functions with which advocacy teams partner to develop or implement disease awareness programs
• Benchmark partners’ successful collaboration stories between marketing and communication
• Function that holds the budget for the design and implementation of disease awareness programs
• Benchmark partner’s narrative around patient ad boards

• Digital tools used by patient advocacy groups that have a positive impact on disease awareness
• Benchmark partners’ narratives around successful internal collaborations with other functions around patient advocacy to impact the lives of patients
• Patient advocacy team involvement in improving the telehealth experiences of patients
• Innovative ways in which patient advocacy teams are leveraging the power of telehealth services

• Impact of patient advocacy team’s effort on guiding research and development – Total benchmark class
• Impact of patient advocacy team’s effort on guiding research and development – Large pharma vs. mid pharma segment
• Impact of patient advocacy team’s effort on guiding research and development – Budget location segments
• Benchmark partners’ narratives around successful collaboration with the R&D function around patient advocacy to impact the lives of patients

• Roles fulfilled by internal advocacy teams when partnering with the R&D group

• Types of data collected by advocacy teams from patient advocacy groups to inform R&D
• Benchmark participants’ partnership success stories
• Benchmark partner’s narrative around successful collaboration with the clinical team

• Legal’s / compliance’s guidelines when reviewing communications and submissions to patient advocacy groups – Total benchmark class
• Legal’s / compliance’s guidelines when reviewing communications and submissions to patient advocacy groups – Budget location segments
• Impact of patient involvement with the FDA

• Effectiveness of partnerships with Government Affairs in changing government policy to improve access to medications
• Legal and compliance involvement in patient advocacy activities
• Effectiveness of partnerships with Government Affairs in changing government policy to improve access to medications – Budget location segments

• Disclosure of financial data on advocacy teams’ contributions to patient advocacy groups – Total benchmark class
• Disclosure of financial data on advocacy teams’ contributions to patient advocacy groups – Large pharma vs. mid pharma segment