Small grants, big goals: innovative research program focuses on MS care and quality of life - National Multiple Sclerosis Society's "Small Grants in Health Care Research" - includes list of projects funded as of 6/7/90

Inside MS, Fall, 1990 by Phyllis Shaw

What Dr. Jones is doing under his HSR grant is preliminary fact-finding concerning general health, personal activities, and use of health services for people with mild MS.

"I am convinced that within the next five years America will have some kind of plan available to people--maybe backed by a consortium of public and private parties--to provide long-term care insurance. what I want to do is lay a foundation of facts that will help determine more accurately the insurance risk that people with mild MS represent to insurers." In order to address the question conclusively, much subsequent research, using different methods, will be required.

On behalf of Dr. Jones the Society put an announcement in INSIDE MS asking for volunteers who had had mild MS for 10 years or more. Jones got more than 1,100 responses; of these, 1,000 were sent a questionnaire. In six weeks Dr. Jones received responses from 91% of them--something of a record, he notes. They were asked about their general health, medical conditions other than MS, how independently they could function, whether they were employed, and how necessary to their lives they considered family or community support. The data have not yet been evaluated.

"If someday we could negotiate long-term care insurance for people with mild MS, this might serve as a springboard for an effort to get similar coverage for those with moderate MS," he notes.

Though HSR grants are generally awarded to applicants who originate the project ideas, the Society may consider a particular research issue of such priority that it cannot wait for an application to be submitted. So the Society will go out and contract with an investigator to do the assigned job. Recently such a project was awarded as a contract to Abt Associates, Inc., a research and consulting firm in Cambridge, Massachusetts. Dr. Sarah Minden, a Harvard Medical School clinician, is directing the project. The aim: to compile and analyze all existing MS data that are not biomedical in nature. This is information that is already available but is scattered throughout published articles, books, unpublished reports, and data bases.

"There are many reports in the literature on demographics, health care use, economics, psychology and sociology--all related in whole or in part to multiple sclerosis," says the Society's Dr. Enteen. "We must get at these data and organize them in order to use them. We need to know all about people with MS, what they need, what services they are getting, where the services are falling short. Who is paying for them? How can we improve services and funding? It may be that no one has ever pulled MS data from some large file. Or maybe they just looked at the data from one angle. Dr. Minden will be looking at the information anew."

How will this be used? "The information will strengthen every aspect of Society work," Dr. Enteen says. "For example, for advocacy, the more you can say about your population and its needs and where the system is falling short, the more chance you have to influence government actions. This is particularly true in view of the many advocacy opportunities that will result from the new Americans with Disabilities Act.