The road to entrepreneurship- Accelerator Week 7&8

Hi! My name is Pavandeep, I am a Research Scientist turned Strategy Consultant, looking to make a difference in the world of healthcare. Join me as I chart my journey into the world of Venture Building at ZINC, a mission driven venture builder that brings together 70 individuals from diverse backgrounds to innovate and build companies in areas of high global need. Cohort seven's mission: the effect of climate change on health.

Accelerator Week 7&8: Bridging the Gap: Transforming Lupus Care for Diverse Communities

During our meeting this week, we caught up with Caroline Olshewsky , the newly appointed Chief Executive of Lupus UK. We explored ways in which our partnership could jointly benefit people living with lupus through new innovations and better community engagement. One topic that came up was the struggle that many patient organizations have in engaging diverse communities. This often means that the needs of communities that are historically underrepresented in patient groups, clinical trials, and patient advocacy groups are overlooked or often not heard.

Why is this important? Well, the majority of lupus sufferers are women, and 1 in 250 to 500 are from either Asian, Afro-Caribbean, or Hispanic backgrounds. However, clinical trials in the space lack any representation of these patients. This may contribute to the high number of clinical trials that have failed to reach their endpoints, thus preventing or delaying vital treatments from reaching patients. Furthermore, once on the market, cultural, language, and physical proximity create barriers for individuals from these backgrounds who need treatment most urgently from accessing them.

Finally, and by no means the least, due to institutional racism, individuals from diverse backgrounds are often of lower socioeconomic status, working gig economy jobs that prevent them from being able to take the necessary time off to attend vital hospital appointments. Symptoms and disease progression may accelerate in these communities at a much faster rate, increasing the burden on local healthcare systems that have to deal with severe complications or delayed and misdiagnosis. This all ultimately leads to higher mortality rates that are approximately three times higher for these patient groups.

That’s why it is vital to engage these communities from the outset. The question is how?

Reach them in their place, language, and community setting: Consider cultural taboos and social norms. Work with community leaders and advocates. Address long-held beliefs and old wives' tales. Coincide outreach with big holidays or social gatherings, rites of passage, and other significant events. Community-based partnerships are crucial.

Engender trust and collaboration: There are strong beliefs in traditional Chinese medicine, Ayurvedic information, and homeopathy that go beyond the traditional approach of Western ideals of care. A preference for these treatments due to a lack of trust in healthcare systems that have let communities down is common. Create a complementary approach and think about how the two can work together. Great examples of this this include encouraging alternative ways to exercise, an activity that is not often prioritised in these communities. However, initiatives and suggestions that can adapt to a persons preferences based on an understanding of these perceptions could be just as effective. Examples walking, gardening, or dancing rather than traditional weight training.

Build in digital solutions to reduce in-person appointments: Prevent absences, enable education, and ensure proper medication use. Make use of multigenerational households and think of how to use this in someone’s everyday life. The old saying goes that it takes a village to raise a child. That same village could also be the key to keeping an individual healthier. Remote monitoring could also play a crucial role in enabling loved ones to care for others and those living with patients to access information in their preferred language and setting.

Engaging diverse communities is crucial in addressing health inequalities in lupus and other autoimmune conditions. By reaching people in their own settings, building trust, and leveraging digital solutions, we can improve access to care and outcomes for underrepresented groups. Our partnership with Lupus UK aims to address these disparities and create a more inclusive healthcare system.

The Kuma Health Ask

Would you like to be part of my entrepreneurship journey? I would love your help in the following areas:

1. We are currently looking for Trusted Testers to support our MVP. If you or anyone you know would like to be the first to use and influence our product, don’t hesitate to sign up here! https://kuma.health/
2. Connect us with Rheumatologists: We would love to hear from anyone who has experience of working in Rheumatology in the US. Do you know someone you can connect us with?.
3. Help spread the word: Are you part of a network that could help us either reach more users or speak to investors? Reach out and let us know, we would love to explore potential partnerships

Thanks for reading this week! As ever, the lovely members of my cohort have been hard at work and are documenting there own experiences. You can access their blogs and newsletters below:

• Donna Egan Zonder
• Veronika Bridgman
• Marjo Palanee MEDow.AI
• Oliver Knight SmartShift Energy
• Louise Thomas and William Hicks who have founded Air Aware Labs with its own weekly newsletter

Thank you to:

• Caroline Olshewsky from Lupus UK for taking the time to speak with us
• Elizabeth Ortiz, MD for giving us an insight into her work and how digital health interventions could make a difference!
• Gloria Lam for the much needed catch up at the The CGT Circle
• Daniel Glazer from Wilson Sonsini Goodrich & Rosati for jumping on a call to discuss all the steps needed for Start Ups to go state side!
• Shane Massey from the Health Innovation Oxford & Thames Valley