May 2009

Grant Results

SUMMARY

From 1994 to 2007, staff at Friends' Health Connection (originally called Long Distance Love), New Brunswick, N.J., created and ran a program that enables hospitalized patients to communicate one-on-one with another patient who has the same illness. Patients report that sharing experiences and feelings with someone who understands helps to improve their functioning and recovery after discharge.

Friends' Health Connection also sponsors:

  • A lecture series in which well-known speakers address health related issues to audiences of patients, health care providers and the general public.
  • A speaker's bureau through which outside organizations can contract with Friends' Health Connection to schedule speakers for their own events.

Key Results

  • Friends' Health Connection developed an online site that helps match patients for mutual support. The site also provides online support groups for patients with various illnesses. The online community numbers between 200 and 300 members.
  • Attendance at the organization's lecture series increased from around 4,000 per year in 2005 to more than 10,000 in 2009—a 150 percent increase.
  • Revenues generated through its speaker's bureau, online bookstore and lecture fees covered 73 percent of expenses in 2009, an increase from 46 percent in 2005.

Funding
The Robert Wood Johnson Foundation (RWJF) has supported Friends' Health Connection with five unsolicited grants totaling $1,931,497.

 See Grant Detail & Contact Information
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THE PROJECT

Friends' Health Connection facilitates one-on-one communication between patients of similar ages who have experienced the same illness.

Roxanne Black-Weisheit, the group's executive director, established the organization under the original name Long Distance Love in 1989 while a college student. Her own struggle with the disease lupus convinced her of the recovery benefits of communicating with a person of the same age who has been hospitalized for the same condition. Read more about Black-Weisheit.

Friends' Health Connection helps patients share their experiences and feelings with others who can offer them special understanding. Participation is open to family members as well as patients. Participants are matched via the Friends' Health Connection database.

Friends' Health Connection received a Points of Light citation from President George H.W. Bush and a 1997 New Jersey Governor's Volunteer Award.

Activities

Until 1999, the project team worked primarily with New Jersey hospitals. The team trained hospital staff to distribute marketing materials and paper questionnaires to patients, and then personally matched patients based on the information provided. Patients would then communicate by written letters or by phone.

The team developed a range of marketing materials to reach out to patients, including posters, brochures, "Rx for a friend" prescription pads, and a newsletter distributed to 65,000 people.

The team marketed the program to hospitals by:

  • Making presentations to executives, department heads and staff.
  • Communicating regularly with participating hospitals.
  • Disseminating program materials to participating hospitals.
  • Meeting with support group leaders, patients and key staff at each hospital.

The group sought to integrate Friends' Health Connection into the patient education and discharge planning programs of the 50 or so hospitals it worked with by conducting educational and outreach programs, including:

  • A lecture series in which well-known speakers presented talks on a holistic approach to health, focusing not only on medicine but also on issues affecting the physical and emotional quality of everyday life.
  • Conferences for health care providers focusing on specific diseases such as lupus, heart disease and irritable bowel syndrome.
  • Mind/body workshops focusing on techniques such as relaxation, stress and pain management, and art and music therapy, for patients and hospital staff.
  • Social events, framed as fun and entertainment that sought to bring people together for emotional support.
  • Annual award ceremonies honoring exceptional service by health care professionals from participating hospitals and facilities.

Developing an Online Community
Under grant ID# 035568, the project team transitioned from a paper-based system to an online system.

In addition, the site offers online support groups for:

  • People with diabetes
  • People with lupus
  • People with fibromyalgia
  • People with chronic pain
  • People with celiac disease
  • Caregivers.

The site also allows patients to post and read blogs. For patients without access to a computer, the program maintains a toll-free phone number.

The transition to the online community allowed the project team to extend the reach of the program beyond New Jersey to the rest of the country. Therefore, there was less need to market the program directly to hospitals in order to reach patients who needed the service. As of 2009, marketing channels for the organization were:

  • Distribution of brochures and information at lecture events.
  • Mailing of marketing materials to nonprofits, companies and hospitals.
  • Articles in national publications (such as USA Today and Martha Stewart's Body + Soul magazine).

The organization's Web site also included information about the organization, news about upcoming events, an online store where people can purchase books by speakers, and other resources. See the Bibliography for details.

Developing the Lecture Series and Speakers Bureau
With the shift to an online community, the project team dropped its sponsorship of conferences, workshops and social events in hospitals in order to focus exclusively on its lecture series, by far the most popular of their events.

As of 2009, the series had featured around 100 well-known speakers, including Barbara Walters, Alan Alda, Christopher Reeve, Deepak Chopra and Oliver Sacks. (A complete list of speakers is available online.) The lecture series also provided a means for marketing Friends' Health Connection.

Building on the success of the lecture series and their extensive network of speakers with expertise in health related issues, the project team also developed a speaker's bureau. Outside organizations can contract with speakers for their own events. Fees charged for the service provide revenues for the Friends' Health Connection.

Working Toward Self-Sufficiency
In 2005, the project team hired Development Resources, Inc., (Arlington, Va.) to help create a three-year business plan. The plan focuses on expanding the organization's lecture series in order to increase its self-generated revenue and minimize its dependence on RWJF and other funders for ongoing support.

Communications

Stories about Friends' Health Connection have appeared in USA Today, The New York Times, Family Circle, Prevention, Women's World and Martha Stewart's Body + Soul magazine. A new book, Unexpected Blessings: Finding Hope and Healing in the Face of Illness (not funded by RWJF), Roxanne Black-Weisheit's personal story of the creation of Friends' Health Connection, is available at her Web site.

Additional Funding

Friends' Health Connection has received funding from corporate, philanthropic and private sources, including individuals who contribute through the donation page on the Web site. The other major funders besides RWJF are Johnson & Johnson ($30,000 per year), Townsend Press ($31,250) and Fleet Bank ($15,000).

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RESULTS

  • Friends' Health Connection developed an online site that helps match patients for mutual support. The site also provides online support groups for patients with various illnesses. The online community numbers between 200 and 300 members. On average, three people join the community every day.
  • Attendance at the organization's lecture series increased from around 4,000 per year in 2005 to more than 10,000 in 2009—a 150 percent increase.
  • By 2009, revenues generated through its speaker's bureau, online bookstore and lecture fees covered 73 percent of expenses—up from 46 percent in 2005.

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AFTER THE GRANT

In December 2008, RWJF awarded a two-year grant (ID# 057026) of $211,625 to Friends' Health Connection. The organization will use the funds to enhance the online patients' community and to update marketing materials to reflect the organization's changes.

Friends Health Connection will work with the information technology companies Higher Logic (Washington) and Avectra (McLean, Va.), to develop a portion of their Web site to match up patients, as well as family caregivers, based on such criteria as medical condition, symptoms, surgeries, and even hobbies and interests.

The project team planned to add these resources to the online community:

  • Disease-specific health care lectures that members can listen to live (either online or through conference calls) followed by question and answer sessions. Recordings of the lectures would then be posted in the relevant sites of the support groups.
  • A library of resources for the different support groups, including information about advocacy organizations, recent research, useful books and interviews with experts.
  • A calendar of upcoming lectures that patients could attend at sites throughout the country.

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GRANT DETAILS & CONTACT INFORMATION

Project

New Jersey patient support program: A model computer-based, patient-to-patient network

Grantee

Friends' Health Connection (formerly Long Distance Love) (New Brunswick,  NJ)

  • Telephone support service for New Jersey hospital patients
    Amount: $ 14,999
    Dates: November 1994 to October 1995
    ID#:  024686

  • Personal support to be made available in New Jersey Hospitals
    Amount: $ 20,000
    Dates: August 1997 to July 1998
    ID#:  031986

  • Statewide program with New Jersey Hospitals for post discharge patient support
    Amount: $ 650,000
    Dates: March 1999 to February 2002
    ID#:  035568

  • New Jersey post-hospital support program
    Amount: $ 738,648
    Dates: March 2002 to May 2005
    ID#:  042918

  • New Jersey patient support program: A model computer-based, patient-to-patient network
    Amount: $ 507,850
    Dates: June 2005 to May 2007
    ID#:  051656

Contact

Roxanne Black-Weisheit
(732) 418-1811
rblack@friendshealthconnection.org

Web Site

http://www.friendshealthconnection.org

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

World Wide Web Sites

www.friendshealthconnection.org provides information about Friends' Health Connection, news about upcoming events, an online store, information about speakers, and a portal to an online community for patients. New Brunswick, NJ: Friends' Health Connection, 2000.

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Report prepared by: Robert Crum
Reviewed by: Robert Narus
Reviewed by: Molly McKaughan
Reviewed by: Marian Bass
Reviewed by: Kelsey Menehan
Program Officer: Terrance Keenan
Program Officer: Marco V. Navarro

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