Parexel’s Post

I am proud to work for an organisation that not only values patient advocacy, but also actively demonstrates its commitment to advancing healthcare equality, ensuring all patients receive compassionate, personalised and equitable care. 🌈 As we celebrate Disability Pride Month, it's important to focus on the role of patient advocacy in healthcare for individuals with disabilities. Why Patient Advocacy Matters… 1. Customised Care: Advocacy helps in tailoring healthcare services to address the specific needs of individuals with disabilities, ensuring they receive the best possible care. 2. Navigating Healthcare Systems: Advocates assist in navigating complex healthcare environments, securing necessary accommodations, and accessing essential resources. 3. Empowering Individuals: Advocacy empowers individuals with disabilities to be active participants in their healthcare decisions, fostering autonomy and independence. Ways to Support… ✅ Educate Healthcare Providers Offer training on disability awareness and patient rights to ensure compassionate and competent care. ✅ Promote Open Communication Encourage dialogue between patients, caregivers, and healthcare teams to address concerns and preferences effectively. ✅ Support Advocacy Groups Collaborate with and support organisations dedicated to patient advocacy and disability rights to enhance their impact. Effective patient advocacy ensures that the healthcare system meets the unique needs and respects the rights of individuals with disabilities. Let’s take action this Disability Pride Month to drive meaningful change and improve healthcare outcomes for everyone. #Parexel #WithHeart ❤️ #DisabilityPrideMonth #PatientAdvocacy #Healthcare #DisabilityRights #Inclusion

IEC | A National Roadmap for Disability-Inclusive Healthcare. Today, IEC is proud to announce the launch of the National Roadmap for Disability-Inclusive Healthcare! A product of our Action to Build Clinical Confidence and Culture (ABC3) Coalition, the Roadmap offers clear goals and commonsense actions clinicians and groups involved with healthcare can take to make healthcare safer and better for people with intellectual and/or developmental disabilities (IDD). What’s in the Roadmap? The Roadmap is a plan for clinicians to learn how to give the best healthcare possible to people with IDD. Specifically, it highlights goals and actions for five groups that are particularly influential in how clinicians are taught. These groups, including educational associations, regulatory and accrediting bodies, and professional bodies, are trusted leaders working across the nation and can bring about change now and in the future. The Roadmap also illustrates the transformative journey a clinician may take from limited IDD understanding to clinician readiness, identifying key factors that foster motivation for equitable care. Why is the Roadmap important? Did you know most clinicians-in-training get very little instruction about IDD? With that information, it’s unsurprising that approximately 60% of US physicians report feeling like they don’t have the training and skills to properly care for people with disabilities. Inadequate training, lack of proper equipment, and outdated assumptions contribute to healthcare disparities for people with IDD, who often face barriers to receiving even basic care. The Roadmap tackles these challenges head-on because everyone deserves high-quality care. How was the Roadmap created? The Roadmap was developed by the ABC3 Coalition, a diverse group that includes people with IDD, care partners, clinicians, and other healthcare leaders brought together by IEC. ABC3's inclusive approach ensured active participation from people with IDD and their caregivers, alongside clinicians and healthcare leaders, guaranteeing that the Roadmap aligns with community priorities and objectives. Support the National Roadmap for Disability-Inclusive Healthcare The Roadmap represents an important path forward for improving the way healthcare is taught to better support all people. We hope you will support the Roadmap and also share it widely among your networks. Thank you for your continued support and partnership. Together, we can ensure equitable care for individuals with IDD. Explore the roadmap here: https://lnkd.in/gjxTp5tK Watch a video about this:

📢 Happy to share my article “Disruptions in care among disabled people and older adults during the COVID-19 pandemic: evidence from Ontario, Canada”published in the International Journal of Care and Caring.  Drawing on key informant interviews (n = 8) and results from an anonymous online survey (n = 36), this article provides evidence of how people with disabilities and older adults in Ontario, Canada, experienced disruptions in different types of care in their multiple caring relationships. The results describe why they were not able to access the care that they needed during a period when activities began to resume and how their caring relationships had been disrupted. The impact of disruption on people with disabilities, older adults and others in their care relationships was exacerbated by barriers rooted in ableism, ageism and other forms of exclusion.  Many thanks to the research participants and organizations and colleagues who distributed info about the survey. This article draws on research supported by the Social Sciences and Humanities Research Council. https://lnkd.in/g8ewnq-G

Today on #PatientsFirst Friday, I'm proud to feature my colleague David Dent MBE, MBA, CMgr, CCMI, FIoD. In addition to his day job as VP in Integrated Solutions Strategy, David leads several global disability initiatives on behalf of our company, including our internal ParAbility workgroup which supports our colleagues with disabilities. (I serve as executive sponsor). 👉 What’s one thing you want people to know? How much intentionally or unintentionally people with disability are excluded from clinical trials. Ethical guidelines that suggest excluding people with disabilities from research without a valid scientific or medical reason is unjust. It denies them the potential benefits of participation, such as access to new therapies. Indeed, in some countries inclusion is required by the regulators (e.g. USA and UK). This exclusion is driven by inadequate recruitment strategies and ambiguous eligibility criteria. Perception of people with disability plays a role. Factors such as available support, necessary adjustments, and sharing of trial results impact participation. Importantly individuals who are already patients are more likely to have health conditions that can lead to disabilities and there are some diseases and conditions which are disabling by their very nature such as CVA (Stroke) DMD, MS, and Parkinsons. 👉 What’s critical to a successful patient advocacy/industry partnership? Engagement and Collaboration is essential to engage with patient advocacy groups and People with Disability in the study design to understand their needs and concerns and those of their care partners. In addition, making clinical trials more accessible to patients by considering location, transportation, and scheduling can improve participation rates, and most importantly not inadvertently exclude them in the initial criteria. Educational initiatives can empower patients to make informed decisions about their involvement and finally collecting data and analysing it with reporting would ensure that data from including people with disability in a clinical trial diverse populations can be self-evident and provide valuable insights into the efficacy and safety of investigational drugs across the community and as disability does not discriminate - it does not impact any other demographic data. Read more about David's story here: https://lnkd.in/eTB-9nxM https://lnkd.in/e3c9bF8D https://lnkd.in/eeHzRKMw #DisabilityPrideMonth #disabilities Finish your work week strong with patients and #WithHeart!

Today's #PatientsFirst Friday is a monumental day. It is the 34th anniversary of the Americans with Disabilities Act (ADA). The ADA is a vital civil rights act that provides access and protections to the 1 in 4 Americans with #disabilities. People with disabilities contribute and add value in our workplaces and our communities. As we close #DisabilityPrideMonth, no one embodies a "can-do" attitude like Sara Simpson. Anyone else would in her situation would find all the reasons to let their situation deter them. Not Sara! She always has a smile on her face, is out enjoying life, and showing all of us "the possible." 👉 What's one thing you would want people to know? Osteogenesis Imperfecta (OI) is a rare bone disease that is present at birth. It can range from mild to severe. OI is caused by a mutation (change) in a gene that affects bone formation, bone strength, and the structure of other tissues. OI is a lifelong disorder and occurs equally among males and females and across all ethnic and racial groups. It is estimated that approximately 25,000 to 50,000 people in the U.S. have OI. With good medical management and supportive care, the majority of people who have OI will lead healthy, productive lives and can expect an average lifespan. People with OI tend to experience frequent fractures from birth through puberty. The frequency then tends to decrease in the young adult years but could then become more frequent later on in adulthood. 👉 What's critical to a patient advocacy/industry partnership? I believe that patient advocacy groups and industry can be successful when you have trust, transparency, common goals, representation, eagerness to learn, and initiatives to be able to co-create programs that benefit the patient. When they prioritize patients' needs and well-being, and are fully committed to collaboration, positive change will happen for both the patient outcome and the industry. You can read about Sara's story and advocacy work here: https://lnkd.in/ePSwtFX8 https://saraspeaks.life/ Finish your work week strong with patients and #WithHeart! #ADA34 #DisabilityInclusion #DisabledAndCapable

A National Roadmap for Clinicians on Disability Inclusive Healthcare This Roadmap was created for clinicians to give the best healthcare possible to people with intellectual and developmental disabilities (IDD). This resource provides clear goals and commonsense actions that different groups can take to inspire change among both practicing clinicians and clinicians-in-training. https://lnkd.in/gCC3XyyM

Such important & worthy research. Looking forwards to the findings and how things can be changed for the better.

Each year, the Case for Inclusion assesses how well all 50 states and the District of Columbia are supporting people with intellectual and developmental disabilities (IDD) to be supported in the community. This year’s Case for Inclusion reveals some promising progress that has been made since we published the 2023 edition of this annual report. Undoubtedly, this progress has been made possible through meaningful but temporary investments in community services. The question now is whether and how states will find ways to build on the progress revealed by the data to transform it into longer-term sustainability in our service delivery system. To glean an understanding of what the data reveals, as well as the roadmap for critically needed policy innovations and what advocates can do to support those innovations, please join United Cerebral Palsy and ANCOR for the national launch of the Case for Inclusion 2024. This webinar is free, but space is limited and advanced registration is required. To register,  visit: https://lnkd.in/ePhg38qy

If you could please take a minute and scan the QR code below and enter your information, it would be greatly appreciated to help find funding for housing and other important services for those with serious Mental Illness and Intellectual or Developmental Disabilities. Thank you. TAKE ACTION by 5/24: Tell Congress to put persons we serve first: New Payment Models Advance the Mission Every day, we strive together to advance our mission of being a compassionate, transforming healing presence in our communities. The vulnerable people and communities we serve often have multiple complex needs. No two people’s needs are the same. Traditional fee-for-service payments do not pay for the total cost of care. This matters because when we are reimbursed for the total cost of care, we can reinvest in services, persons we serve, our colleagues, and our communities. Performance-based contracting in Intellectual & Developmental Disabilities Services (IDDS) starts in January 2025. Providers should be held accountable for the health of the people and communities we serve while advancing health equity across populations. Providers should also be rewarded for high-quality, coordinated care that results in better outcomes for those we serve. Value-based payments and accountable care models are life-changing for individuals and save the community money. With payment models that ensure the right care, in the right setting, at the right time, we all benefit. To this end, we would like to ask for your help with Trinity Health’s newest advocacy campaign, New Payment Models Advance the Mission. When we raise our voices together on important matters, we make a difference. How Can You Help? Take Action by May 24! Reach out to your elected leaders in Congress. Ask them to put persons we serve first and advance new payment models. Scan the QR code or visit https://lnkd.in/eEGbSQug. Type your name and home address. Send the pre-populated message or customize your own. Under “Affiliation,” type Pittsburgh Mercy Health, PA. This is important because it helps us to know how many people joined us in participating. Click submit. The process is quick and effective.

ECTA Center eNotes for February 16, 2024 are available. In this issue: - IDEA Part C Early Intervention Family Survey Data for Federal Fiscal Year 2021 - Response Rate and Representativeness Calculator - Assistive Technology Devices and Services for Children With Disabilities Under the IDEA - Step Up AT - Child Maltreatment 2022 - March of Dimes Report 2023 - A 100-Year Review of Research on Black Families https://lnkd.in/gRBNDt8Y