China Rare Disease Solution Challenge (REPOST)
Eva Woo
Entrepreneur in social impact and shared value
We’ve received overwhelming responses after media coverage on Xinhua, Southern Weekend and interest to join as co-creator of RCL lab, and we are seeing some really interesting ideas coming out from the design process. One potential we’ve seen is the use of AI in medical imaging processing to discover patterns for rare disease diagnosis.
MORE UPDATE TO COME AS WE APPROACH END OF PHASE I
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Tomorrow, on Feb.28th 2017, we, Rare Disease Compass Lab will launch 2017 China Rare Disease Patient Support Challenge in Beijing, to help empower rare disease community and patients in China. Rare Disease Compass (RCL) project is a joint initiative amongst a top foundation in China in rare disease patient support + Tsinghua University+ social innovation lab MakeAPointX.
The Problem
We name the project after Compass （司南）because we see the need for an effective information navigation system as a first step in solving the challenge, but we are not going to limit ourselves to this, because as the problem framing, field research begins, the project will take its own course, what we do is not to be judging and making pre-conceived assumptions, but let it happen through providing the right tools, stakeholders and environment.
The Challenge
Currently we have lined up some critical co-creators (incl some global name in high education and tech and e-commerce) in China to work on the project together, we are open to global corporate and non profit partner to work with us, as sponsor/innovation partner/technology advisor/domain expert/education partner/.. to grow the initial solutions coming out of the challenge further to become sustainable solutions. These solutions will align key stakeholders through a shared set of value, ie our mission as a social innovation lab which dedicates to solving social problems through accelerating cross-sector collaboration and collected impact, and our partner initiator Illness Challenge Foundation (ICF)’s mission of supporting and serving rare disease patients through innovative solutions, global partners’ interests in advancing humanitarian goal and public health initiatives around the world.
China has about 17 million rare disease patients, 80 million population affected ( family members included), many of them are children. Globally, 7000+ rare diseases have been identified, 80% of them genetic related. Given that geographically patients disperse across the nation, made worse as Chinese medical resources are highly unevenly distributed around the country (mainly concentrated in major 1st tier cities like Beijing, Shanghai), accessing diagnosis and affordable cure (and rehab) have been very challenging for tens of millions of patients living outside major cities.
The Opportunity
A 2–3 months “crowd storm” design innovation challenge and workshop series, a semi-open invitation-only field learning course and 0–1 incubation program to come up with better service design solutions to a specific social problem.
In this particular case we are helping rare disease patients and community organizers in China to solve their most pressing problems: inconvenient access to diagnosis and cure, expensive drugs, difficult access to rehab.
We have noticed a few developments in China and globally as social innovation, internet and data technology evolve rapidly contributing to changes in the space:
1) Accelerated pace of orphan drugs coming to the market in recent years: A lot more new orphan drugs have been approved (many repurposed from mass market ones) and come to the market recently. This is reflected in the data from FDA , although controversies around large drug companies taking unfair advantage of the regulations and incentives exists.
2) Increasingly Chinese middle class patients are looking for cures outside China (a result at least partially due to slow approval process at Chinese FDA), the number of cancer patients have ballooned the past couple years, many rare disease patients actively seeking cure are children, there could be increasing need to learn about cure globally 3) Rare disease support groups are growing quickly and increasingly they partner with health companies given groups’ ability to gather data and access to patients. With elevated public awareness, improved information transparency and social media access making organizing groups online easier, more rare disease patients communities pop up with active online and offline activities. Some became close allies of the industry, however controversies arise around how patients’ data should be handled and what would be a fair situation for patients and medical service providers.
4)Possibilities of shared value solutions bridging the knowledge gap between China and the world in rare disease patient support: by connecting knowledge, research, technology and service/product solutions around the world with Chinese patients (a large chunk of total rare disease population in the world), the lab could come up with new insights, solutions that can benefit not only the Chinese patients, but also entire rare disease community around the world.
5) Data analytics, AI technology opens up potential to disruptive solutions in genetic testing and rare disease diagnosis given that 80% of rare diseases are due to genetic reasons. Rare disease patients stand to benefit hugely from the development of “Precision Medicine”, a hot topic in China as well as in the US attracting significant amount of resources from the government and industry. ……..
We follow design thinking/service design process to find the best service design solution to a complex systemic problem. We need to think out of the box, convene and align key stakeholders, pull all the resources and bring about “collective impact” to solve the problem.
Through field and user research conducted using user centered design approach, we gather insights and learn to frame questions and identify the problem to solve. We convene (by selecting and invitation) co-creators: motivated community organizers and leaders (social entrepreneurs), design thinkers (coaches/facilitators) , project “client” (in this case ICF foundations), educators (Tsinghua and BNU professors), social innovators (project manager and support) , creative outsiders and students (Tsinghua Service Design Institute, Beijing Normal University UX program) , knowledge partner(domain experts and hub ie China Association of Medical Professionals) and industry sponsors, to go through a 2–3 months process, including workshops, lecturers, online discussion groups and forum. …… We iterate, prototype and test, and gather feedback and then we repeat, finally to come up 4 solutions (co-creators divided into 4 groups) to help patients and patient groups, foundation, doctors to improve efficiency to identify information, collect and mine information, making decisions related to finding individual patients’ diagnosis and cure.
1) The Illeness Challenge Foundation 病痛挑战基金会 (the initiator)
A top Beijing-based foundation supporting rare disease patient and community organizations in China. The foundation has successfully raised public awareness through series of campaigns in 2016, conducting research survey, with videos and articles reaching millions of viewers. See more impact data here. The foundation is led by Wang Yi’ou, a social innovation leader in the space formerly head of rare disease non profit “China Doll (Ci Wa Wa)”, together with ICF’s main advisor Ma Yanyan.
The foundation was launched in 2016, board members and chief advisors including main foundation leader, celebrity CCTV host, director of Peking University’s Global Research Center on Medical and Pharmaceutical Management , head of Ministry of Health’s Rare Disease Expert Committee and rare disease expert, top researcher on social security system, etc. More about ICF ‘s 2017 campaign initiatives in rare disease in China see here
2) MakeAPointX 造点X (the co-initiator/ social innovation lab operator/challenge and course designer/innovation catalyst/convener/fascinator)
“MakeapointX” is an innovation lab and education institute dedicated to combining social good and business innovation through open-innovation and design thinking approach. It works with organizations to incubate, accelerate and co-create new product and service solutions, initiate campaigns to promote “next generation of businesses”- sustainable businesses creating social and environmental values. Working with domain experts, it takes sector approach to facilitate business innovation and address social problems. Currently its areas of focus include Chinese cultural heritage, sustainable food, health and education.
Other Partners A China-based global tech company and its foundation
3) Tsinghua University, Service Design Institute (major co-creator and strategic partner)
Chinese Association of Medical Professionals, USA (CAMP)
Tsinghua University is a top university in China, sometimes dubbed as China’s Stanford or MIT. The Service Design Institute of Tsinghua will be our main academic partner, co-developing the 10 week (2 months) course this Spring, integrating the rare disease challenge and lecture workshop series throughout the course. The Director of the Institute at Tsinghua will collaborate with full support on course development, teaching, provide venue, graduate students and other forms of support (see above Yonghui case for academic partner’s role)
The China-based e-commerce conglomerate is a data/cloud technology driven company with global operations. The company has a subsidiary focusing on health that are building content and IT based health solutions. The group also has a large foundation.
A leading global social innovation supporting platform (TBD)
Based out of Johns Hopkins at Balimore, CAMP is a network of 500 Chinese medical researchers living and working in the US and China, with many current and former visiting researchers at Johns Hopkins University and affiliated hospital. CAMP will provide research support, access to medical resources and knowledge through the doctors and researchers on the network to help Chinese rare disease patients to find cure.
Technology Advisor (TBD)
And we are in discussion with the following explore ways to collaborate
A Global Online Challenge Co-create Platform (TBD) More on our Approach and its proven initial success
In global best practice and case sharing.
A top research focused US-based Artificial Intelligence startup on CB Insights top 100 global AI companies the company has made medical and health as a major focus area, with a founder who is a Chinese native and investors including some most promising VCs and tech giant names in China. The company is interested in going into this experimentation with us with an open mind, contributing its knowledge to inspire solution seekers with new possibilities, meeting potential partners in a space they are interested in exploring.
We will follow a design thinking process, and university- industry- social sector collaborative model, and a targeted 0–1 solution incubation approach that we have tested and achieved initial success with our stakeholders in our previous challenge how to make supermarket relevant (or cool) again (known as “Yonghui Freshmen”). In the Challenge, we convened a top grocery chain Yonghui,a top design and art college in China (China Academy of Art), and co-creators and best and brightest coaches/facilitators in design thinking in Shanghai/Hangzhou area. You can find a project summary here on our approach and our outcomes. Phase I of this Yonghui Freshmen project just concluded, with commitment from corporate sponsor Yonghui to partner with us in further incubating and growing all four solution outcomes from 4 teams. Yonghui’s venture arm Yonghui YunChuang plans to invest in capital and internal resources to incubate those solutions, China Academy of Art plans to sponsor with seed funding from the school dedicated to supporting students’ entrepreneurship eduction and field work, team members are our first choice to develop the ideas but once they choose not to we’ll open up for external entrepreneurs to grow the project prototype.
I will write another blog post about the YongHui Freshmen project with more lessons learned and takeaway. The bottom-line is our corporate co-create partner, a 6 billion yuan market cap grocery chain Yonghui Superstore on Forbes Fab 50 2015 list, was very pleased with the results and would like to take it further down the path. Nevertheless we ‘ve also learned tremendously about the obstacles and difficulties for large companies that knows too well what they are doing to come up with really fresh innovative solutions.
Social Innovation Case Study-Ashoka Initiative and fellow Making More Health (MMH) is a global initiative that aims to create a healthier world for individuals, communities and families. By supporting social entrepreneurs and social entrepreneurial thinking MMH will lead to innovative solutions and create social impact, help to find innovative business models and will also create a benefit for our own organizations and employees:
In the case MakeAPointX was acting as an external innovation lab working with the social sectors and external creators. We are happy to walk you through and we do have a project summary briefing our approach and our outcomes that we can share with our trusted partners.
Please contact eva_woo@sinovator.org or get in touch with me on LinkedIn for more information.
Caroline Kant is an example. There are probably a few others. More soon.
- The Changemaker：http://www.makingmorehealth.org/shared-value/mmh-fellows/caroline-kant
- The organization：http://esperare.org/
- Key：In collaboration with patient groups and other key stakeholders, we uncover the potential of existing pharmacotherapies to address severe therapeutic unmet needs in rare diseases.
- THE PROBLEM：250 million people are affected by rare diseases, but only a small percentage has access to treatment. Patients and their families face stress, anxiety and pain while waiting for treatments.
- THE STRATEGY: EspeRare serves as a neutral and trusted broker to manage and drive the complicated process of drug repositioning among the major actors (patient groups, regulatory bodies, clinical research partners and pharmaceutical companies).
- THE IMPACT: EspeRare is currently undergoing two repositioning programs, with 5 to 7 more in the pipeline. The partnership principles signed by Merck Sorono during her first repositioning program set a precedent for the industry.
- SUSTAINABILITY: EspeRare engages financial investment from pharmaceutical labs in its repositioning process and pools additional resources (mainly public grants and pro-bono partnerships).
Entrepreneur in social impact and shared value;
Originally published at https://www.linkedin.com on January 18, 2017.
