Clinician- and Researcher-Focused Materials

Producing Material

Writing an article for a peer-reviewed scientific or medical journal can call attention to your organization in an important way. If you feel that your organization has made some significant strides or contributions to some area of research or services, then submit a paper to a relevant journal. Collaborate with a researcher or clinician. Be creative.

While you may not able to participate in the creation of an article reporting scientific results, journals also publish editorials or informative articles, such as the effectiveness of advocacy, novel uses of resources, or implications of health care policy for your organization's condition. In addition, they publish letters to the editor.

Working with Existing Material

Many organizations find it helpful to have some type of access to scientific material on the condition they represent. Having the research findings alongside the clinical and advocacy information provides a comprehensive view of the condition, and is especially helpful for clinicians and researchers. There are, however, limitations on the reproduction of scientific publications, as they are often copyrighted academic property. Usually, the abstract (summary) of the research is all you can offer without express permission, and access to full articles can often require payment. It is important to weigh the costs and benefits before providing this sort of information.

• One of the simplest and fastest ways of providing research information is to post the abstract along with a link to another site where the full text is available (though there might be either a subscription necessary or a one time access fee). Always remember to include the proper scientific citation for the articles!

• Getting permission to offer full articles can be made easier if you have a private forum through which to share it, instead of posting it in a completely public domain.

• Instructing your members on how to obtain articles for themselves is another option. If the proper citation is provided, patients can take that information to their doctor, who can access it, and it can be reviewed that way. Many hospitals and clinics have medical libraries that may also have the article available to read.

• NORD is an organization that provides research articles for a nominal processing fee.

The following is an example of one organization's approach on how to increase the depth of knowledge for the condition they represent.

Geraldine Bliss

Phelan-McDermid Syndrome Foundation

“One of Phelan-McDermid Syndrome Foundation’s goals is to increase physician’s knowledge about how to take care of patients with Phelan-McDermid Syndrome (PMS). Actually, the real goal is to change physician behavior, so patients receive appropriate care.

I’m honestly not sure if CME’s are the best way to accomplish this goal. I’ve gotten mixed opinions. Perhaps we could meet the goal equally well by developing a place either on our website or somewhere else that physicians could find easily digestible written content. It seems to me that “easy to find” and “easily digestible” are going to be very important, if we truly expect to change physician behavior.

"Easily digestible” might translate into an infographic showing the major areas of health challenges in PMS. This would give a busy pediatrician a quick overview of the conditions that need to be monitored and an idea of what kinds of referrals will need to be made. For physicians who need to learn more, perhaps they could click on different areas of the infographic to read detailed information, including recent practice parameters. It would be nice if we could offer CME’s to physicians who read all the content and pass a test, but I don’t know how important it really is.

Below are a few of the comments from the physician-parents I surveyed about the value of a CME course:

• I completely agree with having an information page easily accessible to physicians who want to pursue. I would make it very user friendly- start with basic information and links to pursue more details, research, etc. I don't think CME credits are essential- most of us get enough from our own specialty-- but maybe primary care docs would want something different. Again- I would focus on easy accessibility- simple format and links or contact information for more details.

• I personally think a CME product would be a tough sell to get a regular physician to do. We have never had difficulty getting the appropriate tests ordered for our daughter. Obviously being docs it is easier for us to get what we want. I do all my CME either at conferences or on web through my journals. I haven't done an outside course in years. Routine CME's are very easy to get now and often are supposed to be specialty specific. I do like the idea of a web based information page for some doctors who want to learn more. I do think it matters more who the doctor is (caring, inquisitive) rather than whether or not CME is offered. An information page that gives some informative and some websites might allow the doctor to take something home with them, rather than expecting the doctor to remember a website.

• My experience with my son’s physicians and neurologist has been frustrating. I have provided them with reprints about PMS, but I am fairly sure that they were either too busy or not interested enough to read them. I seriously doubt that they would actually watch a Webinar.”

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