PALADIN recommends that sponsors engage patient advocacy leaders during the annual budget planning process. This may be in the 3rd or 4th quarter of the previous year however, providing advocacy groups with a head’s up about the volume and type of work that is planned can enable better access to resources to meet the needs and timelines. If the work plan shifts, advocacy leaders will understand, but expect to be kept up to date in real time about any change in timelines. This will allow them to also adjust their resource demand projections. When planning for support, it is important to recognize that it may take several weeks to several months to execute contracts, identify the right patient advisors or associated resources. A project plan should include the start-up time and this aspect discussed directly when establishing the plan.
1. We want to be an advocate for your organization and for your patient community. Information helps us do that.
Established metrics or key performance indicators that you can share with us from your programs are super helpful as we translate the return of investment to our senior leadership and pitch to receive budget for your events, awareness activities, and community support tools.
2. The more notice you can give us on future funding support opportunities, the better.
When it comes to sponsorship for programs throughout the year, it’s helpful for pharma to understand a patient advocacy group’s needs and priorities at the beginning of the calendar year so that they can submit and plan for that budget allocation 4-5 months before the start of the new fiscal year. Some pharma companies begin their fiscal year in July while others begin in January. It’s a good idea to ask this as you begin conversations and get to know one another. Even though we may want to, it can be challenging to fulfill sponsorship requests that pop up in the middle of the year because our budgets are already tied to specific initiatives or services.
3. The decision-making process can be long.
There are several reasons as to why it may seem drawn out to get a decision around sponsorship, material development, approvals, etc. In such a heavily regulated environment, multiple pharmaceutical teams may need to approve materials (i.e., clinical development, legal, clinical operations, compliance, communications, commercial development, marketing, etc.) depending on the use and audience (i.e., education for patients and their families or health care professionals.) Even in the most streamlined of companies it can take a while.
4. There can be internal stops and starts, slowing down, and then moving quickly. When we come to you asking for things quickly, it is not a lack of consideration for your time.
There are many factors that go into investment decisions at pharmaceutical companies, looking at scientific, regulatory and market considerations. Pharma is always doing the delicate and difficult job of determining which assets are most likely to make it to patients. We know that in so many indications, patients are waiting. Yes, we are accountable to our investors, but we also feel accountable to the communities we are tirelessly working to serve. We want to give potential therapeutics the best shot at reaching and helping patients. This unfortunately can mean making really hard decisions. Sometimes studies (and spending for a particular therapeutic program) are paused until therapeutic area leadership and strategy teams determine the best way to proceed to develop a meaningful, safe, and effective new therapy. Then they are greenlighted, and it’s full speed ahead as quickly as possible.
5. We always appreciate when you let us know if you’re connecting with other people at our company.
One of our challenges is aligning within a large company across multiple functions who are eager to engage with patient organizations for different purposes of awareness-building. We will do our best to ask if you’re engaging with folks in commercial, R&D, patient advocacy and policy, and medical affairs. We’re also always happy to explain how our role or function works within the larger drug development process.
1. We are accountable to our community.
We are the voice of the community and understand their greatest needs, fears, and what brings them hope. We know the risk involved with therapeutic development and that programs can end. We appreciate you being transparent and setting clear, reasonable expectations. Waiting to connect with us may mean opportunities for information-sharing and collaboration are missed. For example, if we know you may have a genetically targeted therapy in the pre-clinical stage, perhaps we could begin an education campaign with our community, so they understand the value of getting tested. Knowing what you are doing helps us as we think about our investments and how those investments can support patients and advance the field in the short- and long-term.
2. Key to understanding each other – be an active listener.
This should be an opportunity to get to know one another and learn about each other’s priorities and long-term strategic goals. Getting to know us means we may have mutually valuable opportunities for potential collaboration. We appreciate when you look at our website to see where our priorities lie prior to our first meeting. We invite you to check in with us and learn about what we are working on. We’d love to work with you to make patient-centric precision medicine a reality.
3. Yes, we’d like financial support, but that is not that only way you can help us.
Maybe you or one of your colleagues can provide thought leadership on a future project. Maybe you have thoughts on how we could maximize the value of our patient registry. Maybe your scientific colleagues can share information with their peers about an upcoming conference. Create a company team in support of an activity, such as a walk/run or participate in a health fair or other community event hosted by the group. Collaboration can go far beyond money. Also, we understand that an early-stage program may not be able to provide financial support. There’s still so much more that we can do together beyond organizing financial support.
4. We are the experts in the patient experience and appreciate this distinction.
We want our stories to be shared and heard. We want to collaborate with industry but please recognize that we need to be impartial for our communities to trust us. We may not always be able to move at the pace you would like. Last minute requests may not fit in with our own project timelines or limited staff availability. We’re happy to provide feedback, but we appreciate transparency and compensation for our time and support. If we contribute to an initiative that results in publication, please make sure that we (patients and patient advocates) have the opportunity to co-author. Given our varied capabilities across PAGs, while we may not be able to provide study awareness building in a manner you envision; it doesn’t mean we can’t creatively educate the community. We encourage you to ask us about our timelines to engage in different activities.
5. If we’re an after-thought, you’ve missed valuable input.
Think of us as a non-promotional partner that can help you with early study planning, feasibility, design, and feedback. Bringing us in before you have a concept sheet during study development gives us the opportunity to confirm that your endpoints and study objectives are meaningful to the patient community that you’re looking to serve with ample time to reflect our input. We’re grateful that you’re exploring therapies that can bring hope to us and our families – many patient organizations like ours want to help you throughout your development program – with study planning to ensure success, education, awareness-building, study result dissemination, and public policy.