Begin a patients' support group

September 1, 1998

Pharmaceutical Representative

Starting a support group can change your life. The effect you can have on patients' lives is truly tremendous.

"Adding value" is a buzz phrase commonly heard in pharmaceutical sales today. But beyond adding extra tomato sauce to the pizzas you deliver to physicians' offices, how exactly can you do that?

Sheila Murphy, a Roche Laboratories sales rep in Beverly Hills, CA, found one way when she conceived of the idea of beginning a support group for patients with Parkinson's Disease. The group, cheekily named "Shakers 90210," is a forum in which patients can learn how to cope with their disease and find camaraderie.

PR: If a sales rep is interested in starting a group, how does he or she get started?

Murphy: Talk with others who have already been involved in starting a support group. One of the best ways to do this is to contact a national association at their headquarters. From them, you can obtain the location of the nearest support group and call them directly for assistance. The American Parkinson's Disease Association, for example, is located in New York at (800) 223-2732, and they can provide the phone number of the nearest APDA Information Referral Center and Support Group.

PR: What if a rep doesn't know what happens at a support group meeting? How can they learn more?

Murphy: For a Parkinson's Disease group, you could call the National Parkinson Foundation to get the name of the closest Parkinson Disease group. Other disease groups, such as epilepsy and diabetes, also have national foundations and they may be your best starting point.

Once you learn where a support group is being held, start attending all of the meetings. This will help you get a feel for what goes on, and inspire you to come up with some ideas of your own.

However, if you still feel you need to learn more, check your local library or book store for topics of discussion or support groups. Good examples for Parkinson Disease groups include Parkinson's: A Patient's View by Sidney Dorros and The Parkinson's Handbook by Dwight McGoon, M.D.

PR: How can sales reps convince patients to attend the first meeting?

Murphy: First of all, you can advertise in your local media. Most radio stations and newspapers accept public service announcements and will publish them free of charge. You can also ask local advertising agencies to donate a little to their community by designing and invitation ad for you to place in local relevant magazines. Second, you can place flyers in senior centers, supermarkets, libraries and in senior residential communities. Finally, you can ask targeted physicians for permission to place flyers or small posters in their waiting rooms.

PR: What are some creative ideas for a first meeting?

Murphy: Begin with introductions. Have everyone share what has brought them to your new support group. You should have a supply of name tags at each meeting to create a feeling of intimacy at the first and subsequent meetings.

As the founder, you should welcome everyone by stating what got you interested in beginning the support group in the first place.

PR: What about the second and third meetings?

Murphy: Attendees should state their preference about meeting times and places. Then, everyone should brainstorm and develop a list of discussion topics. Examples might include inviting a physician to speak about Parkinson Disease medications, or watching a new video on coping with the disease. Shoot for three ideas before concluding the second meeting.

Each meeting can be assigned to a different member of the group. That member is charged with the responsibility of arranging the speaker or the video, or generating questions. As the support group leader, you should serve as the backup.

Also, the group should decide about refreshments and rotate who will bring snacks.

And finally, distribute a complete directory listing of all members in the group, and formally set the next meeting time, date and place.

PR: Can you recommend some potential topics of discussions?

Murphy: Start with very basic concepts and branch out from these. Topic discussions might include a definition of the disease, diagnosis and treatment, nutrition and the disease, coping with the disease, how care partners can deal with the disease, exercise and how to make adjustments in their work life.

PR: Is it all right to delegate tasks? If so, which tasks are good choices to delegate?

Murphy: Let's face it: You can't do everything. Consider delegating some of the following tasks:


•Â Nominate a second group leader so he or she can serve as your back-up, if necessary.


•Â Elect or appoint a secretary who will keep membership lists up to date, prepare and send meeting notices and correspond with members as needed.


•Â Choose someone to be the telephone contact person.


•Â Entrust someone with publicizing the group.


•Â Find someone who has the particular disease state that you're dealing with, and have that person serve as your consultant every step of the way.

PR: Is the reward of leading a support group worth the effort?

Murphy: Starting a patients' support group can change your life. The effect you can have on patients' lives is truly tremendous. You need only be willing to give up a little of your free time and energy. PR

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