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Advocacy Groups: Enhancing Relationships and Patient Recruitment [email protected] ©2013 Industry Standard Research www.ISRreports.com PREVIEW
Advocacy Groups: Enhancing
Relationships and Patient Recruitment
©2013 Industry Standard Research www.ISRreports.com
PREVIEW
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Report Overview
This report provides qualitative insight on advocacy groups’ relationships with the pharmaceutical industry. The report explores their current philosophies toward clinical trials, provides recommendations and best practices for encouraging patient participation in trials, and identifies opportunities to partner (or build on existing partnerships) with the industry.
What you will learn in this report
• The type of relationships advocacy groups desire with industry, including: involvement in clinical trial design, collaboration on patient recruitment, and role in connecting patients to industry
• Advocacy groups’ concerns with encouraging clinical trials, including: the need to remain neutral, patient education, and trial burden on patients
• Recommendations and best practices for delivering messages to patients and families about clinical trials
How you can use this report:
• Uncover proven strategies to more effectively enroll patients in your rare disease/difficult-to-recruit trials
• Learn to optimize communication strategies to ensure an “all inclusive” approach to relationship management considers all key players (advocacy groups, patients, caregivers, and investigators)
• Develop strategies to anticipate, discuss, and mitigate advocacy group concerns and hesitations
1. Relationships with Pharma• Clinical Trial Design
• Patient-Industry Relationship
• Opportunities for Industry in Trial Design Process
2. Clinical Trial Focus• Clinical Trial Focus Spectrum
• Concerns with Encouraging Clinical Trials
• Website Focus on Clinical Trials
3. Clinical Trial Recruitment Practices• Clinical Trials 101 – Back to the Basics
• Patient Registry
• Recruitment Best Practices
• Managing Relationships
4. Patient Advocacy Groups’ Requests of Pharma
• Low Trial Focus Advocacy Groups
• High Trial Focus Advocacy Groups
5. Patient Advocacy Group Profiles
Major Sections
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Methodology
In ISR’s qualitative analysis, ISR conducted 40-minute telephone interviews with senior decision-makers
at 10 US-based patient advocacy groups. The individuals interviewed hold a variety of roles within their
organizations, but all are in a position to speak to their organization’s philosophy on clinical trials, as well as
their organization’s broader relationships with the pharmaceutical industry.
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Table of Contents
Table of ContentsCopyright and Usage GuidelinesMethodology
Roles of Interviewees
Participating Patient Advocacy Groups
IntroductionRelationships with Pharma
Clinical Trial Design
Involvement in Clinical Trial Design Spectrum
Patient-Industry Relationship
Patient-Industry Relationship Spectrum
Opportunities for Industry in Trial Design Process
Early Bird Gets the Worm
Talk to Me
Key Takeaways
Clinical Trial FocusClinical Trial Focus Spectrum
Concerns with Encouraging Clinical Trials
Neutrality
Patient Understanding
Patient Burden
Additional Concerns
Website Focus on Clinical Trials
Website Assessment
Key Takeaways
Clinical Trial Recruiting PracticesClinical Trials 101 – Back to the Basics
Patient Registry
Use of Patient Registry Spectrum
Examples of Patient Registry Use
Best Practices
Delivery is Key
Keep Patients in the Loop
Help Me Help You
Put a Face to the Organization
Level With Me
Don’t Forget the Doctors
Bring It All Together
Managing Relationships
Key Takeaways
Recruiting Best Practices Summary
Advocacy Groups’ Requests of PharmaLow Trial Focus Advocacy Groups
High Trial Focus Advocacy Groups
Patient Advocacy Group ProfilesOrganization A
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization B
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization C
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization D
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization E
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization F
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization G
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization H
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization I
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization J
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
About Industry Standard Research
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www.isrreports.com ©2013| EDC-‐ePRO Market Trends and Service Provider Performance 26
5%
5%
4%
5%
6%
20%
14%
11%
6%
11%
50%
43%
39%
40%
31%
25%
38%
46%
49%
52%
0% 20% 40% 60% 80% 100%
Integra[on capabili[es with other applica[ons (ePRO, IVR)
Technical support from the vendor
The process for dealing with queries
Speed of the applica[ons, how fast the pages load
Human-‐machine interface (how intui[ve the soeware is to operate)
No impact Slight impact Moderate impact High impact
EDC Operational Improvements
Most impactful EDC product attributes for trial success
“For each of the EDC product attributes below, please indicate how much impact each has on your ability to successfully run a clinical trial that uses an EDC application.” (Base = 100)
Of the list of attributes provided, respondents indicate that “technical support” and “integration capabilities” had less of an impact on running clinical trial when compared to the software performance.
© 2013 Industry Standard Research
Sample Page
IntroductionAs ISR’s research has revealed time and again, patient recruitment is one of the most difficult and time-consuming aspects of conducting a clinical trial. Though the biopharmaceutical industry utilizes a wide range of recruiting techniques, one that ISR believes has not been fully (or even adequately) leveraged is partnering with patient advocacy groups to encourage trial participation.
Patient advocacy groups are spread across the spectrum regarding how involved they are with clinical trial recruitment. All respondents posit that clinical trials are the way to move forward but many have yet to delve into playing a role in the recruitment process. There are various reasons why an organization may not have fully developed this offering so industry will have to tailor its approaches to individual advocacy organizations. The bright side is that advocacy groups already playing in this space are searching for continued and more involved partnering opportunities and organizations without processes in place for patient education and recruitment are open to discussing partnering options with industry.
This report sheds light on advocacy groups’ relationships with pharma, current philosophies toward clinical trials, best practices for encouraging patient participation in trials, and opportunities to partner (or build on existing partnerships) with pharma.
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Sample Page
Clinical Trial Recruiting Practices
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Best PracticesAdvocacy organizations have developed some best practices and some unique ideas for clinical trial education and recruitment� These practices will be detailed here as organizations can learn from successful strategies of other advocacy groups and industry can learn where it can lend a hand to support these initiatives�
Delivery is Key
Respondents shared several best practices in terms of delivering messages to patients and families about clinical trials�
Consistent LanguageConsistency in language is critical� When messaging about key facts about a clinical trial, try to use the same wording as is used in other information about the trial from the sponsor company or CRO� This will help the patient to form a coherent understanding� Talk to PIs to understand how they talk about the trial with patients so a consistent message can be relayed to the patient community�
RepetitionRepeat� Repeat� Repeat� The messages of education and encouragement to participate in clinical trials have to be reinforced� One mention in a magazine article is not going to get the job done� Patients need to be educated on what trials are and need to be reminded about what trials are available� The National Multiple Sclerosis Society, for example, has found that interest is generated when a news bulletin about a study is first posted on its home page� If requested, the Society may or may not repost a trial on the home page every few months to garner renewed interest�
Consistent Language
Repetition
Audience Understanding
Impactful Message
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Sample Page
Patient Advocacy Group Profiles
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Organization B
Spectrum Summary
Relationship with Industry
The patient population for Organization B’s disease focus is relatively small and our interviewee mentioned that pharma does not spend a lot of energy in this therapeutic area� For the trials that have taken place, this organization has had some collaboration regarding clinical trial design but on a rather limited basis� Our respondent relayed that the organization has a good clinical trial infrastructure and a high degree of expertise in the disease� This group would be eager and willing to collaborate with industry should industry decide to put more effort into researching this disease and its secondary issues�
Clinical Trial Focus and Recruiting Practices
The interviewee from Organization B would like to put more effort into educating patients about clinical trials, particularly because these patients tend to be leery of research� It has not put a great deal of effort into education as a high proportion of its money is funneled into research� The respondent believes that the pharma/biotech industry could help to develop good educational materials for patients that would explain that while a trial might not work for an individual patient, “a rising tide lifts all boats�”
Organization B has a registry in which it tracks patients’ disease progression and outcomes� The database is federally funded and is made available to researchers for
Low
Mid
High
Focus on Clinical Trials
Emphasis on Patient-Industry
Relationship
Registry Use to Promote Trials
Involvement in Trial Design
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