Executive Women s Breakfast Patient Advocacy Real Trust, Real Partnerships for Real Innovation
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- Stephany Copeland
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1 Executive Women s Breakfast Patient Advocacy Real Trust, Real Partnerships for Real Innovation June 15, 2010, Merck & Co. Inc. This well-attended Executive Women s Breakfast (EWB) featured an executive panel discussing Patient Advocacy Real Trust, Real Partnerships for Real Innovation. The moderated panel discussion featured an audience response system (ARS) to engage and capture the responses of the attendees. Panelists included: Moderator: Wendy Lund, CEO, GCI Health Ellen Lambert, executive director, corporate contributions and EVP, The Merck Company Foundation Anne Quinn Young, VP communications, Multiple Myeloma Research Foundation Ann Moravick, CEO and founder, Rx 4 Good Caleb DesRosiers, VP and COO, HillCo Health During the ARS warm up session, the audience was asked what type of company they worked for. The ARS response indicated that 68.9% of attendees worked for a pharmaceutical company, 0% for biotech, 24.4% for an agency or service provider and 6.7% for a nonprofit organization. Audience members were also asked if they had previously attended an EWB program. The ARS response showed that 40% of the attendees were at their first EWB event. The following report summarizes the topics, ARS results and the panel discussions by topics. What do you perceive to be the biggest value of patient advocacy in the industry today? The audience response as measured by ARS showed the following responses: 43.9% - Raise awareness on medical issues, diseases and patient needs 26.8% - Educate patients about treatment options and resources 9.8% - Impact public policy 9.8% - Accelerate clinical development 7.3% - Source of market intelligence and insights to support product and program development 2.4% - Other 1 of 5
2 Key points from the panel discussion on this issue included: Organizations should consider patient program collaboration and co-share opportunities Creating access to and education through patient programs needs to be a more dynamic process The industry must play a role in teaching patients how to use available programs Industry must be part of the public policy discussion as healthcare reform will have an impact on both professional and educational groups We can learn from AIDS advocacy groups as they made a great business case for their cause and have worked with biopharma to develop drugs Since the US healthcare system is set to go through major changes in this decade as a result of healthcare reform, explosion of an aging population and overall increase from $2.5 trillion to $4 trillion, what are some of the long-term issues which patient and clinical advocates need to consider? Key points from panel discussion included: The industry needs to develop strong relationships with contingents Patients are grateful for company investments in patient advocacy programs Advocacy and industry need each other, but it s a tenuous time for these relationships The biopharma industry has changed and is looking for ways to support patient advocacy The industry needs to re-strategize its spending on patient programs An organization s clinical department should be involved with patient advocacy groups at the early stages of program development What do you think is foremost on the minds of patient advocates in our changing industry climate? The audience response as measured by ARS indicated the following responses from attendees: 43.9% - How to secure funding to keep the lights on 36.6% - How do we become more collaborative? 12.2% - Who do we partner with now? 7.3% - How to maintain transparency? 2 of 5
3 Key points from the panel discussion include: Keeping the lights on (survival) is a daily struggle for most nonprofit agencies Healthcare reform is going to change how patients get their medication, which will impact advocacy groups Over the next 4 years, a larger percentage of the population will be begin receiving healthcare from some type of government program It is critical that we understand the [patient advocacy] audience and work to help meet their needs Companies cannot start advocacy activities just as they are bringing the product to market; they must meet with patient groups early in the process and continue those relationships through the entire lifecycle Companies can provide nonprofit organizations with funding, yet it is just as important to share information and data that can add value; finding new ways to share, beyond funding, is key It is important to understand the key issues for patient groups as well as what barriers exist to treatment when working with advocacy groups Do you see patient advocacy groups and other healthcare players as having a significant role in advancing innovation in the industry? The audience response as measured by ARS indicated the following responses: 76.9% - Yes 17.9% - I m not sure 5.1% - No 3 of 5
4 Key points from the panel discussion included: Innovation is narrowing in our industry and we need to look at a broader perspective The new healthcare reform legislation has $20 million allocated for innovation o The US government wants to create policy around the data that will be collected o Our industry needs to get involved in these discussions before decisions are made and funds are spent The area of healthcare information technology is a key area for innovation o Personalized medicine is an area with much innovation and has implications for diagnostic companies o Electronic medical records (EMRs) are evolving rapidly and industry should engage patient advocacy groups in conversations about issues associated with EMRs, such as patient access to their medical data Over the last few years, there have been a lot of changes in the way pharma and other companies partner with patient advocacy groups. Describe this change, its impact and what you see as the most effective way to build partnerships that will create impact in The key points from the panel discussion included the need to: 1. Develop trust with advocacy groups prior to discussing critical issues 2. Be transparent in all communications 3. Understand the patient advocacy landscape (e.g., patient services, treatment) 4. Recognize that all patent advocacy groups are not the same What do you feel is the most common misstep that companies make when defining their patient advocacy initiatives? ARS indicated the following responses from attendees: 63.2% - Confusing advocacy with promotional objectives 26.3% - Trying to accomplish too much 10.5% - Don t agree on mutually beneficial objectives 0% - Aren t clear about messaging 0% - Don t address patient unmet needs 4 of 5
5 Key points from panel discussion included: Expectations of patient advocacy groups need to be clearly defined to ensure that the end result meets the stated objective Industry needs to understand that our activities with patient advocacy groups impact our credibility as much as our marketing plans Social media is a great way for advocacy groups to raise funds, however, unclear government guidelines make it difficult to maneuver in this arena As an industry, there is an opportunity to create the fabric of what is to be the basis of healthcare. o We need to inform policy makers, CEOs, and COOs that we need industry funds to stay here in the US and we need to be mindful that in the long run we lose by moving manufacturing jobs overseas Companies should consider their employees as ambassadors of patient advocacy programs In summary, the panel brought up many significant changes which are occurring in the industry, all of which impact patient advocacy programs. Advocacy programs not only have become increasingly important for patients in many disease states but also provide benefits for all stakeholders. 5 of 5
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