PILLAR 1: FIND AND ENGAGE THE HYDROCEPHALUS COMMUNITY
The Hydrocephalus Association still remains relatively unknown by the majority of individuals in this country living with hydrocephalus. It is estimated that there are approximately 1 million Americans living with hydrocephalus, yet our membership reflects only a very small portion of that number. Additionally, we have individuals who have used our services or participated in our programs at one point in time, but have disengaged. Strikingly, engagement within some major markets is below expected levels, suggesting important opportunities in these areas. Increasing the numbers of patients connected with the association will increase our ability to serve patients’ needs, as well as our fundraising capacity. Media, medical professionals, and volunteers are key channels for this effort.
- Increasing Awareness of HA by the Patient Community. Increasing our visibility is imperative to individuals finding and engaging, and re-engaging, with the association.
- Increasing Engagement of the Patient Community with HA. Once patients and caregivers are aware of HA, we must show the value of connection to the association in order to move them through the pipeline toward active engagement.
PILLAR 2: FUND AND PROMOTE HIGH IMPACT RESEARCH TO ADVANCE CARE, TREATMENTS, PREVENTION, AND ULTIMATELY A CURE FOR HYDROCEPHALUS
Research offers hope for present and future generations of patients, and underlies the association’s vision of a world without hydrocephalus. Since its inception in 2009, HA’s research program has been highly successful not only in generating research findings, but also in growing the research community and building infrastructure for that community. The task is to continue funding, and promoting the funding of, high impact research, while strengthening the infrastructure further and helping guide the research community toward areas with maximum benefit for patients.
- Leveraging and Coordinating the Research Networks. The best way to advance research is to fund and encourage high impact research through the discovery science and clinical research networks and to coordinate promising basic, translational, and clinical research across the networks. Our efforts will be sensitive to areas where there are special opportunities or needs.
- Incorporating the Patient Voice. Patients are the best arbiters of what they need. Understanding community needs will allow us to prioritize research that brings the greatest benefits to patients, and engaging the community in research will help researchers with design and with recruitment for trials.
- Growing the Research Community. In order to obtain the most impactful research, we need to grow the research community and to engage the best researchers from related areas outside of hydrocephalus research. This will ensure that we bring in new ideas, techniques, and expertise, and that patient priorities outside the scope of traditional hydrocephalus researchers are addressed.
- Advocating for Outside Research Funding. In order to sustain and accelerate our impact on hydrocephalus research, and to encourage researchers to dedicate their careers to hydrocephalus, we must ensure the research community has funding opportunities beyond the Hydrocephalus Association.
PILLAR 3: IMPROVE THE LIVES OF THOSE IMPACTED BY HYDROCEPHALUS AT EVERY AGE AND EVERY STAGE OF LIFE
The provision of services to those impacted by hydrocephalus is a critical part of HA’s mission, and does much to connect the patient community to the association (Pillar 1). These services include acting as a source of information and social and emotional support and working with the medical community and other stakeholders to improve care. Adulthood stands out as a phase of life that has been underserved. But there are also more general opportunities to improve the services offered by HA, to ensure all patients get what they need. These opportunities relate importantly to the increasing role of online information and connection in everyone’s lives. They will also require understanding better our community’s needs, including any gaps in what HA provides and any areas where the services provided do not match needs.
- Improving the Care of Adults with Hydrocephalus. Reflecting the early focus of hydrocephalus care on pediatric populations, adult hydrocephalus patients—including transitioning teens, individuals with NPH, and others—face special challenges in accessing and managing care. To close the gaps, the association needs to support providers in adopting best practices and helpful models of care, and make it easier for adult patients to access the information they need to be effective partners in their own care.
- Improving Access to Information. Patients across the entire age spectrum must have access to current and comprehensive information in order to make informed decisions. Such information also serves those working to support the patient, be it in the school, workplace, or home setting. As the trusted provider of information outside of medical institutions, the Hydrocephalus Association, with the Medical Advisory Board, are uniquely positioned to meet this responsibility.
- Supporting Personal Connections. The journey with hydrocephalus can feel isolating, particularly in moments of crisis. Connecting to HA support staff and to other individuals can provide invaluable sharing and emotional support, while also developing long-term sustaining affinity with the association as a steadfast partner in the patient and family’s life journey.
- Improving the Legislative Framework. Protecting federal and state laws, policies, and programs is critical to sustaining and improving quality of care and quality of life – from the provision of healthcare, to educational programs, to protections in the workplace. The Hydrocephalus Association has a responsibility to advocate on behalf of the hydrocephalus community on public policies and legislation that will impact the lives of all people living with the daily challenges of hydrocephalus.