I recently had a brainsplat moment when I was researching disease support groups in Los Angeles for a project, and I struggled with the fragmented nature of these listings. If you have ever tried to find a free disease support group for either yourself or a loved one, you might comprehend what I mean when I say ‘fragmented.’ What I found was that if you are in need of disease support, and you are indeed searching for a group, it’s just that – a search.
My brainsplat came in a ‘What if…’ moment as in ‘What if LA had a single payer option for all 3 of it’s nationally ranked healthcare systems?” or ‘What if LA physicians’ first choice for long term pain management was a virtual reality solution?’ or ‘What if my own UCLA PCP could do a home visit?’
What if.
My question is….what if LA had one central online location for collecting information related to online and in-person disease-related support groups across the LA basin?
What if instead of trying to track down a certain type of cancer support group in Los Angeles through exhaustive research—especially if there is no support group related to your disease through your chosen healthcare system—you went to one online portal and from there you began your research? Within this one portal would be all in person support groups—such as caregiver support groups, lupus support groups, depression support groups, etc.—from all 130+ hospital systems across Los Angeles County, as well as online resources.
Why do I think this is kind of interesting?
Let’s backtrack a bit.
The Genetic and Rare Diseases Information Center of the National Institutes of Health reports that there may be as many as 7,000 rare diseases, and that it is estimated between 25-30 million Americans are living with some form of a disease. Considering that Los Angeles County is the nation’s largest county with over 10 million residents, I imagine our region is a microcosm of our nation, and that there are as many patients with diseases—let alone—rare diseases as there are anywhere else. And in person disease support groups in Los Angeles aren’t as common. At two of our nationally ranked medical centers, UCLA Health provides 17 support groups and the Cedars Sinai provides 16.
Depending on your illness, your hospital care system may or may not be able to provide you with an ongoing support group. Unless your disease falls into the main ‘disease categories’ as in cancer, diabetes, heart disease, parkinson’s you most likely will need to look beyond your diagnosing healthcare system and search in the privatized, non-profit disease associations for such a group.
Assuming you find a group, it is most likely not ‘LA close’ to where you live. I feel that this is defined as within 4 miles of your home. But there are some areas, where 4 miles in a car on certain days at certain times is 45 minutes. Toluca Lake to Cedars Sinai between 8am and 9am Monday thru Friday, for example. Forty-five minutes might even be generous.
If you are lucky enough to find an in-person support group, even then, information about support group leaders is inconsistent. Contact information doesn’t get updated in a timely manner. Listed email addresses can be defunct. Contact person has moved on to something else. Calendar listings are from 2004. The list goes on.
Support groups also exist online. Facebook in particular is a great resource, and by virtue of being online, individuals have easier access to a ready, and able free support group. And they have the benefit of being as large as needed, without having to consider space, food, beverage, audio visual, transportation, parking, etc. – all issues that pertain to in-person events. But online support groups can only go so far. True, they are excellent for finding patients who are experiencing the same conditions and symptoms as you, and provide 24/7 communication options, but the older a patient gets, the less likely they will engage online. The older a patient gets, the more likely he or she would attend an in person support group, but as mentioned above, in person support groups have their own challenges.
So back to my question – what if Los Angeles County had one central online calendar for all disease support groups in Los Angeles?
Possible positives:
- One portal for all disease in person and online support groups that occur across LA County
- In one portal a patient/caregiver can see all support groups for a specific disease across the County
- Patient/caregiver can see support groups by day/time through a calendar and by location through a map
- Accurate, up to date and cleansed data
- Ability to expand beyond disease related support groups
Possible negatives:
- Data cleansing – data needs to be verified as correct before publishing, with a continual process for data cleansing
- Data maintenance – what data is published will then need to be continually verified for accuracy in perpetuity
- Inconsistent contact info for support group organizers – even if a support group is listed, you may not be able to connect with the support group leader
- A lot of research required to fill in gaps
- Very manual in nature – what you see on the page is what you get. These listings are not available through an API
- Inconsistent content reported across disease support groups in Los Angeles – one lung cancer group might provide name of leader and email only, while another might provide name, email, cell phone, address, calendar of themed discussions, etc.
Possible assumptions?
- Assumes that patients and their caregivers seek out the support of others afflicted with the same condition
- Manual data collection process
- Patients/caregivers would be willing to travel great distances and jump through traffic if there are disease support groups in Los Angeles of interest, especially if someone is inflicted with a rare disease of some kind
- I know we often think positively about attending a support group, but does the average patient?