BACKGROUND
In May of 2022, Brooklyn White was contracted by the Parkinson Association of Alabama (PAA) to strategically revitalize their Care Navigation Program which also included an online Alabama Parkinson's Disease Resource Center. The organization had attempted to launch a program beginning in 2018 but was met with many challenges, most of which included the proper development of the program, bringing awareness to the program, as well as challenges from COVID.

 

STRATEGIC ENGAGEMENT

The engagement began with a kick-off session over zoom with key board and staff members to get a full understanding of the history of the organization's initiatives and current state of the program. During this session, Brooklyn guided the team through a SWOT (Strengths, Weaknesses, Opportunities and Threats) analysis to define the organization's current temperature and develop distinguishing messages, identify service gaps, and funding challenges all to arrive at projected goals and objectives to bring the organization back to their mission: Improving the quality of life for those affected by Parkinson's disease, their care partners and families throughout the state of Alabama.

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While this initially was about a specific program, going through this exercise helped the PAA understand overall improvement needs to marketing and the organization as a whole. This also helped pave the way to meet the request for developing a new strategic plan for the PAA for the years 2023-2026 which is currently underway.

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After the initial kick-off meeting, Brooklyn began her research. She first wanted to hear from the voice that the organization serves. She developed questions for a digital survey, hosted more than a dozen in person focus groups, and personally interviewed medical providers and key contacts, resulting in more than 150 people contributing to data gathered. This helped to unbiasedly validate the theory that people needed  both an online resource center and care navigation program for the Parkinson Association of Alabama (PAA). 

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The findings were clear and original assumptions proven; the organization needed to strike the balance between serving those who wished to get their educational resources online through self-navigation while also providing options for person-centered care navigation services to those who preferred a more guided approach. The results also demonstrated that most were seeking resources, but they didn't know what information they needed to know. In other words, they were reliant on the PAA to know what education was needed and present it back to them proactively.

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Additionally, Brooklyn performed research to learn what services were already being administered through government programs in the State of Alabama, and compared what other national Parkinson's organizations (Michael J. Fox Foundation, Parkinson's Foundation, Davis Phinney Foundation, PMD Alliance, and the American Parkinson's Disease Association) were offering to those impacted by Parkinson's. This research helped the organization understand the gaps that needed to be filled for Alabama residents, but also how to leverage existing programs via partnership without reinventing the wheel. That research, combined with the findings from those impacted and serving Parkinson's patients, helped define the needs for the program and distinguishing factors for how the PAA could best implement their mission.

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Other like organizations serving neurodegenerative conditions in Alabama such as the Multiple Sclerosis Foundation's Alabama Chapter, the Alabama Chapter of the ALS Foundation, and Central Alabama Alzheimer's associations were also investigated. This helped the PAA define other opportunities that could be shared and leveraged via partnership amongst the group on common educational needs. Also, it allowed the PAA to understand what models and programs had been implemented successfully for the geography of Alabama.

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The PAA's original theory wasn't off, but they needed the concrete evidence to prove and discern what content was needed to build the program as well as guidance on how to build the program. This helped the PAA validate the program they had in mind and provided the data and research needed to properly develop the program while staying within project scope and meeting an ambitious timeline to deliver within one year.

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PROGRAM DEVELOPMENT

Utilizing the strategic plan, distinguishing factors, gap analysis, and the goals and objectives of the PAA's mission, Brooklyn developed a program plan that strikes the balance between providing resources needed both digitally and through a guided, person-centered assessment. This program included a projected timeline, production needs, resources, and staffing to be able to get to a goal for launch within an agreeable timeframe.

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PART A: SELF-NAVIGATION

While the Parkinson Association of Alabama had some resources available online through their website, the need for a separate but connected Online Resource Center that was easy for those impacted by Parkinson's and their families to navigate was critical.

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As a result, Brooklyn researched and developed content based on key and proven research to develop a specific web site organized by the user  journey. She also determined the best Website platform that could affordably host and implement the resource center. Because Brooklyn was the key person that had obtained the data, she best understood how content needed to flow on the website. This allowed for a streamlined process, that when combined with her technical ability to actually build the website herself - she was able to reduce overall stand-up time with quality content.

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The website features five key sections for those that might suspect they have Parkinson's disease or have been newly diagnosed, with sections on available treatments and therapies, common topics, and FAQs. Additionally, it includes a section specifically for the Care Partner to understand how they can best advocate and care for their loved ones and their selves. Most importantly, local resources specific to Alabama residents with complete and accurate directories are available - making this a GO TO Resource for those living with Parkinson's in Alabama. You can find the resource center online at www.parkinsonalabama.info. 

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It took about three months to cultivate the content from the signed agreement, and three months to build the site. Brooklyn was the only one that worked on the project. Had there been additional resources and funding, the project could have been expedited with additional freelancers or contractors. Additionally, the Association went through an internal review process and all data was validated and approved by the entities mentioned on the site. The site was able to be published, indexed with key search engines, and officially went Live in February of 2023 - three weeks prior to the deadline of March 1st. 

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PART B: PERSON-CENTERED CARE NAVIGATION

Simultaneously, a Care Navigation program was built that included a guided assessment to those newly diagnosed with Parkinson's to best understand their unique journey so that they can be connected with the resources that matter most to them. The success of this program depends on the referrals from Neurologists and Movement Disorder Specialists throughout the state. A campaign was directed to all 193 Neurologists in Alabama to gain traction, awareness and referral support of the program, launching in January of 2023. This program was officially launched the last week of February, hosting its first three requested care navigation sessions. The program is measured by surveys sent to participants of Care Navigation sessions to measure satisfaction of services provided.

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LAUNCH AND AWARENESS

One of the biggest issues the PAA has faced was understanding how to properly bring awareness affordably to the services they wanted to provide. With a thin budget for promotions and marketing (Less than $10,000,) they needed creative and affordable actions to generate awareness. To bring awareness to the program's existence, Brooklyn developed a marketing and promotional plan to drive community connection. In addition to recruiting neurologist referrals directly, a campaign for general community awareness was also developed and implemented in March and April of 2023 in alignment with Parkinson's Awareness Month. These activities included:

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• Communication packets to Neurologists and Movement Disorder Specialists throughout the state, Parkinson's service providers, Certified Parkinson's Therapists, Parkinson's Program Administrators, and Support Group facilitators with invitations to zoom demonstrations.

• Awareness campaigns with press releases, print media ad placements, magazine editorial and TV engagements, radio spots, social media and digital marketing campaigns, all to bring awareness across various channels and all within budget.

• Roadshows, presentations and participation at events including the annual Parkinson's Patient Education Symposium, Central East Alabama Regional Parkinson's Symposium, and Support Group Meetings throughout the State of Alabama were also leveraged with demonstrations and printed materials about the new available resources.

 

MEASURING FOR SUCCESS

Upon official launch, the program has been well received. Many accolades and messages of appreciation have been delivered by participants. Medical providers who have reviewed the details of the site are extremely enthusiastic and willing to refer their patients to the resource developed.

 

Quantity can be an easy measurement. Quality is more difficult to measure. How can you know if you have truly and positively impacted the quality of life for the persons you have served? You can certainly get testimonies from your biggest fans and advocates. You can capture the thank you emails received. But true success will demonstrate a larger, more engaged, and networked community for the PAA.

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To measure for continued success, the organization will track all incoming calls and care navigation sessions, as well as traffic to website visits. This allows the PAA to quantitatively measure demand of the program to scale its growth, but also qualitatively measure its impact. 

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In essence, the measurement may not be seen for years. However, the organization believes that by being the ones to truly impact the wellness journey for those living with Parkinson's, their care partners, and families from diagnosis throughout their journey, the PAA will see additional funding and donations from individual contributors - another marker of program success.

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FUTURE PROGRAM DEVELOPMENT

A clear roadmap for growth has been developed. There are many wish list items to implement in coming years, including a PD Buddy Program, Provider Education Symposiums, additional Support and Movement Groups established throughout the state, and extended rural reach with educational programs for the underserved audiences. The website will always evolve with the latest content.

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As demand of the program grows, the PAA wishes to be able to hire additional care navigators strategically placed throughout the state to offer even more geographical, person-centered services with boots on the ground. A strategic plan has been developed to measure the demand and know when to implement these services affordably. Additionally, the PAA will be working on a new Care Ambassador program that leverages and formalizes volunteer programs from service providers who specialize in Parkinson's. And as greater, deeper, and more significant connections are made with the physicians treating Parkinson's throughout Alabama, the program is expected to flourish. This requires constant cultivating, fostering, and nurturing of relationships as well as awareness campaigns.

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FUNDING

During the strategic engagement, Brooklyn was able to help uncover potential available grants to assist with the offset and funding of the program. Many untapped resources and service providers have also surfaced based on a referral network that will result in future corporate sponsorship packages to support the program.  Most importantly, by having a tangible, visible program in place - it is much easier to make the ASK for additional funding. As a result, the PAA has seen one of the strongest years of contributions despite inflation and a weary economy impacting so many other non-profit organizations.

 

CONCLUSION

Brooklyn White fulfilled and concluded her engagement with the PAA in August of 2023 and wishes them much success as they continue to evolve and grow in future years.

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Your organization can benefit from a similar engagement. If this seems like a project that could benefit your organization, please contact Brooklyn White at brooklynwhite1218@gmail.com to schedule a free consultation.

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