Questions and Answers
- We are a small local organization. What will a support organization get by joining the Strokefocus community?
Once you become a part of the community, you will immediately start working together with several stroke support groups around the world. We would like to work with you to understand your needs first and find how we could support you. We will also help you set up online support group meetings if you are interested.
- If you are a support group, we will help your group list on our system, making it easy for survivors to find you, and for you to manage survivors.
- If you are a local association with support groups under you, you can request a free website provided and managed by Strokefocus. The site has built-in powerful features including event management, newsletter, and blogs. Your groups will be listed on the map. For example, this is the site Strokefocus provides to Northwest Brain Network: https://www.nwbrain.network, which is being set up by a team of very dedicated professionals and survivors. If you already have a website but would like to use our infrastructure, no problem. Take a look at the Stroke Survivors Foundation (South Africa) website: https://pdss-staging.strokesurvivors.org.za. Our infrastructure seamlessly integrates with their site. And we make sure there is no disruption to you.
2. Is there a charge using the Strokefocus platform?
We understand how little financial resources most support organizations have. Although Wohaula LLC, owner of the Strokefocus platform is a for-profit organization, there is absolutely no charge in using the Strokefocus platform at this point.
We are working with support organizations around the world to help each participating team develop a sustainable business model. Only when this is completed, we will consider adding fee-based services.
3. Is this service free to survivors and caregivers?
It is our No 1 principle that the primary services to survivors and caregivers will remain free.
4. Are the participating organizations rolled under Strokefocus?
Quite the contrary, each organization’s independence is key to our success.
We believe successful partnerships can only be formed when we collaborate as equals. The collaboration is an opportunity for us to find out how everyone can work to advance your vision.
5. Is Strokefocus collecting survivor data?
Strokefocus does not collect survivor data. You sign up survivors and we help you store information.
We strongly advise our participating teams not to get obsessed with the so-called big data model. We are here to serve survivors and families. The focus should only be engaging survivors and families with useful information.
6. How did you arrive at the number that only 0.1% of those impacted by stroke have long term post-discharge support? Are you overstating the number?
No. In fact, we are probably understating it.
Here is the simple math:
- There are around 7 million stroke survivors in the US.
- Let’s name those impacted by stroke the stroke population. We know each stroke impacts at least 3 people in the long run: the survivor, 1 caregiver who is usually the spouse or some other family member, 1 child or parent.
- Therefore, it is reasonable to estimate that the Stroke Population in the US is at least 21 million.
- By the end of 2017, there were 1000 stroke support groups registered under the National Stroke Association.
- Even we assume each support group has 20 active members, much higher than the actual number we have observed, there are about 20,000 Americans supported by these organizations.
- 20,000 over 21,000,000 rounds up 0.1%.
- 99.9% of those who need long term post-discharge support are not covered.
- We also estimate that the support groups need to grow significantly in size and number to cover those impacted by stroke.
- To cover 48% of the Stroke Population, assuming the number of support groups stay the same, we need an average size of 10,000 active members per group. To cover 72%, the average size of a support group should be 15,000 members.
7. We are ready to produce anything for the community now. Maybe I should wait a little bit?
The best time to join is now. Please do not feel pressured to produce anything right away. We believe you being an interested observer by itself adds value. We would like to bounce ideas off as many people as possible.
8. The insurance companies are hard to convince. Hospitals are not easy to bring on board. What will you do to bring them to your side?
The team believes the inefficiency and disconnect in today’s stroke and TBI care hurt everyone, including hospitals and insurance companies. We focus on helping local support organizations grow and bringing values to survivors, families and researchers. When the model proves itself, different parties will come on board.
9. How do you manage regulatory requirements like HIPAA, POPI Act etc.?
Information security is the top priority for the Strokefocus team. Protecting the privacy of survivors and families is part of our mission. We spend a lot of time designing our process to make sure they are compliant with regulatory requirements.
Most importantly, Strokefocus is NOT a data collection project. We are building a model that does not focus on Big Data at all. The power of our model is that it is designed as a natural hedge to help our partners stay compliant with HIPAA, POPI Act or other regulatory requirements.