Support groups and community resources: online resources

I recently discovered a new resource (new to me at least) that I thought I would share. I came across The Self-Help Sourcebook Online when I was doing some collection developement at the Patient and Family Resource Centre.*

The Self-Help Sourcebook Online is a searchable database that includes information on over 1,100+ national, international and demonstrational model self-help support groups, ideas for starting groups, and opportunities to link with others to develop needed new national or international groups.

This database uses information provided by the American Self-Help Clearinghouse, a department of the Behavioral Health Center of Saint Clare's Health Services in Denville, NJ, which published The Self-Help Sourcebook, 7th Edition in Fall, 2002.

Type in your keyword or select a "problem" from a drop down list, and you are provided with a list of support groups and community resources. It is very comprehensive, providing links to groups for everything from acne scars to albinism to selective mutism to cancer to workaholics to depression... well you get the idea.

One of the things I especially like about it is that it provides guidance for those people who would like to develop their own support group, in case there isn't one locally.

You can also browse a list of similar international clearinghouses. The Information and Referral Centre of Greater Montreal is particularly interesting to me of course. Check to see if your state/province or country is listed.


*I found the Sourcebook listed in the CAPHIS Consumer Health Bibliography for the Small Public Library.

Pediatric MS: case

Case

Scenario

One of the Herzl health professionals (HP) comes to see me while I am working in the library. She has a young patient, a nine year child, who has been diagnosed with pediatric MS. She would like some information for the family.

Resolution

This diagnosis is relatively rare and we are both thinking it may be difficult to find information. As she will be visiting the Montreal Children's Hospital that Friday I suggest they go to the Family Resource Library there, which is excellent, in case they have any special resources on the topic. I tell the HP I will follow up when I am at the Herzl and ask her to write up an InfoRx and leave it for me so that I can fill out a consult.

The next day I call the Family Resource Library at the Children's to see if they do in fact have any special resources on the topic, which it turns out they do not. I decide to do a quick Google search first thing Monday to see what might be out there. I don't normally turn to Google first unless I looking for the US name of a drug before looking it up in a US resource, but this time it seems like the thing to do. I am surprised to see how many excellent resources come up right off the bat:

Search: pediatric multiple sclerosis

Results:

For the health professional:

MS Society of Canada
Hospital for Sick Children Paedetric Multiple Sclerosis (MS) Clinic

National MS Society (US)
Pediatric MS

Quebec chapter of MS Society of Canada


For the patient and family:

MS Society of Canada publications on young persons with MS
Includes an activity book for children with MS, a guide for parents, and answers to FAQ

University of California Children's Hospital
Pediatric MS Center

National MS Society (US)
About MS: Pediatric (Childhood) MS

Children's Hospital of Philadelphia
Neurology: Pediatric Multiple Sclerosis Clinic

National Pediatric MS Center at Stony Brook University Hospital

I also search NOAH (New York Online Access to Health), as well as the default MedlinePlus, to see what they have on the topic. Noah has a couple of links to to the National Multiple Sclerosis Society, ones I have already found, but MedlinePlus does not have anything at all on the topic.

Discussion

(Also see Challenges post for today)

I recently gave a course to hospital staff on using Google wisely and well, and one of the things I made a point of stressing is that Google is just a means to an end. There is a lot of controversy surrounding the use of Google as a diagnostic tool, and especially on its use by consumers to find health information. I believe that *if* you know what you're doing, and more importantly *if* you know how to evaluate what you find, then it can be a really useful, if unreliable, tool for finding information quickly in multiple resources.