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ASPECT Patient Engagement Program

“ASPECT has taught me that storytelling is a foundational and powerful piece to educate and advocate for improved outcomes for people with vision loss.”

~ ASPECT graduate

“The ASPECT program has really helped me to improve my self-efficacy as a patient advocate and increase the quality of my self-care.”

~ ASPECT graduate

Call for Applications!

ASPECT Application Deadline - Friday, November 11, 2022

Apply Today!

The application period is now open for all who wish to participate in the ASPECT (Advocacy, Support, Perspective, Empowerment, Communication, and Training) Patient Empowerment Program at Prevent Blindness. We are recruiting individuals with vision impairment or blindness as well as allies (i.e. loved ones, nonprofit representatives, multidisciplinary clinicians, and researchers). The program aims to equip participants with knowledge, skills, and confidence to become advocates for vision and eye health- at the individual, peer-to-peer, community, state, or national levels.

Who is eligible to apply? Individuals of all ages (including family members of children younger than age 18), with any eye disease/condition, residing anywhere across the nation and globally. Classes are free and held virtually every other week for 8 sessions total, spanning June to September 2022. Specific dates and times to be determined based on the needs of the group. Patient and caregiver participants will receive an honorarium for participation.

ASPECT participants will:

  • Partake in eight two-hour educational sessions designed to build advocacy skills and knowledge, communication techniques, and increase awareness of eye conditions other than your own.
  • Learn the components of storytelling and become familiar with use of storytelling as an advocacy tool.
  • Learn about avenues for patient-engagement and its importance (i.e. research, advisory or advocacy boards, technology, presentations, social media).
  • Discover a sense of community through listening to the stories of your peers, sharing, and supporting one another through the challenges and triumphs associated with visual impairment and blindness.
  • Build leadership capacity by having the opportunity to co-facilitate sessions and present on various topics to your fellow participants.
  • Be invited to join the annual Eyes on Capitol Hill advocacy day and/or the Focus on Eye Health National Summit, as able.

The deadline to apply is Friday, November 11, 2022.

For additional questions about the program, reach out to Julie Grutzmacher, Director of Patient Advocacy and Population Health Initiatives, at: [email protected]preventblindness.org

Advocacy, Support, Perspective, Empowerment, Communication, & Training

Why is the ASPECT Program needed?

The patient has been described as the ‘greatest untapped resource in healthcare’, and patient engagement termed ‘the blockbuster drug of the century’.

Health-focused efforts must incorporate factors identified by the patients and allies themselves, and the only way to achieve this is by having robust program in place to incorporate their voices. To date, no such program exists to support the patient’s role as a leader in vision and eye health in the U.S.

What is the ASPECT Program?

To address the lack of a program supporting patients in vision health, Prevent Blindness developed the ASPECT Program– Advocacy, Support, Perspective, Empowerment, Communication, and Training– which aims to strengthen our patient empowerment efforts for vision into a coordinated program that engages the individual in a more comprehensive manner. The goal of the ASPECT Program is to empower individuals to be engaged in their eye health from every direction and in every way.

Who Participates in the ASPECT Program?

Individuals of all ages (including family members of children younger than age 18), with any eye disease/condition, residing anywhere across the nation and globally who are passionate about becoming vision and eye health advocates. Past participants have ranged in age from 17 to 80’s. They have been individuals with vision impairment and blindness, researchers, low vision rehabilitation experts, Occupational Therapists, Optometrists and Optometry students, Ophthalmology residents, Emergency Medicine physician, artists, writers, psychologists, and entrepreneurs.  You must have access to a computer and internet.

Apply to Join the ASPECT Program

How will the ASPECT Program be implemented?

From the start, the ASPECT Program will be intentionally carried on a collaborative basis; meaning together we will coproduce the learning experiences from meetings and workshops, communication approaches, and establishing a Patient/Ally Leaders Expert Advisory Group for the life of the project. Through this new approach all aspects of needs and opportunity for growth will be addressed.

What will the ASPECT Program accomplish?

Through their participation in the ASPECT Program, patients and allies will:

  • Become versed and involved in the vision condition that impacts their life and understand the disease process
  • Receive our V2 (Voice for Vision) advocacy training which creates powerful voices addressing vision conditions in local, state, and national settings

Voice for Vision Sample Curricula Topics:

      • Anatomy of the eye
      • Storytelling as an advocacy tool
      • The use of technology and social media to promote your message
      • The advocacy process and mock legislative sessions
      • Mental health and well-being
      • Engaging in research- what it is, why it matters that patients get involved
      • Patient-provider communication and model of disability
  • Gain access to diverse platforms in which they can lead the change in policies resulting in an improved quality of life for those at risk of or experiencing vision loss

We recognize that these individuals have the most powerful voice when it comes to making the case for improving practices and policies related to eye health– but they might not have the skill sets or opportunities to raise their voices. The ASPECT Program will change all of that.

What are the long-term outcomes of the ASPECT Program?

  •  A patient-driven curricula promoting engagement in eye disease and eye health preservation is implemented
  • Diverse eye health organizations have an opportunity to collaborate in a program that will result in passionate and engaged advocates that will further drive each of their missions
  • Each cohort of patient graduates from the ASPECT. Program will serve as an ongoing resource for individual or peer-to-peer education, support groups, eye disease campaigns, educational resource material development, provide committee membership or leadership on behalf of eye health, or advocate at all levels for improved access to eye care and treatment
  • Patients are provided with tools and education that gives them control of their eye disease in a new way, allows the participants to be a leader for eye health, and to have their story and experience recognized for its importance
  • Best practices in patient engagement will be developed and shared via diverse communication channels

How can I engage with ASPECT?

Individuals/groups interested in engaging with ASPECT should contact Julie Grutzmacher, Director of National Collaboration and Engagement at Prevent Blindness ([email protected]) to determine opportunities for direct collaboration or support.

ASPECT Patient Engagement Program

The consequences of patients not engaging is borne most heavily by the patients themselves and their families, in the form of emotional, physical, social, and financial costs; but it also has a significant impact on social and healthcare systems with respect to duplication of efforts, decreased capacity, wasted resources, suboptimal outcomes and increases in health inequities.

ASPECT Program

Cohort 1 (FY 20-21)

23 participants total

  • 10 patients
  • 11 Caregivers/ Allies/ Clinicians/ Researchers
  • 2 nonprofit partner representatives
  • Variety of ages and eye conditions
  • 8 Under-represented minorities
  • Representing 12 states

Cohort 2 (Summer of 2021)

24 participants

  • 19 patients
  • 7 clinicians/researchers
  • Variety of ages and eye conditions
  • 14 under-represented minorities
  • Representing 11 states and New Zealand

A – advocacy: Provide opportunities to shape policy and practices that promote healthy vision, access to care, and reduction in vision impairment

S – support: Provide resources, peers, and professionals that will help individuals understand their conditions, the disease process, and work toward an improved vision-related quality of life

P – perspective: Promote inclusion of patient perspectives at the local, state, and national levels leading to effective and sustainable systems, processes, and outcomes

E – empowerment: Establish a pathway for participants from self-discovery, to peersupport, to community engagement as it relates to their vision and eye health

C – communication: Create a communication system that provides evidence-based education, peer-to-peer support, and consistent information from a trusted source

T – training: Build skills in patients and individuals that fosters fully inclusive, confident, and collaborative work with professionals, clinicians, and policy-makers

ASPECT Fact Sheet

Apply to Join ASPECT

Who supports the ASPECT Program?

The ASPECT Program is generously supported by the following corporations:

Sustaining Level Partners

Genentech

Horizon

Novartis

Premier Level Partners

Apellis

Supporting Level Partners

THE AR AND JR PEACKOCK TRUSTS

Biotechnology Innovation Organization

Oxurion

Spark