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Posted April 17, 2003

Request: Looking to set up a Parent Advisory Group. Especially interested in learning how other practices have done this: e.g. pay parents? incentives for parents to join? how meetings are run? lessons learned etc.

Responses:

Parents as Primary Care Policy Advisors
The Parent Advisory Group at Nashaway Pediatrics, Sterling, MA. Promising Practices: Family-Professional Collaborations that Promote Improvement in Services for Children with Special Health Care Needs - Massachusetts Consortium, June 3, 2004.

Involving Families as Advisors Toolkit
Patients and their families bring fresh perspectives and creative solutions to assure quality of care. This toolkit provides resources and handouts to help you involve families as advisors or consultants in your organization based on the Family Consultant Project, a model for sustaining meaningful involvement of family members as expert consultants.

General Publications on Parent Advisory Groups:

• Parent Advisory Groups in Pediatrics Practices: Parents' and Professionals' Impressions by Young, M., McMenamy, J. and Perrin E. (2001) Pediatrics & Adolescent Medicine, 155, pages 692-698.
  The publication discusses the issues to be considered in setting up a Parent Advisory Group in a practice.
  
• The Institute for Family-Centered Care has a publication called Developing and Sustaining a Patient and Family Advisory Council by Patty Devine Webster & Beverley H. Johnson© 2000.
  This resource profiles a variety of consumer advisory councils, their structures and activities. It provides guidance on establishing a new council as well as sustaining the momentum of an existing council. It also describes council responsibilities and the impact a council can have on an organization. The Institute also produced a document on Informal Ways to involve Families in Advisory Roles (other than councils). For more information on the publication or document, contact Rosalie Parrish, MEd, PCSN, Program Specialist, rjnparrish@aol.com
  
  Curriculum/ Training Information:
• The Division of Specialized Care for Children (DSCC), Illinois' Title V program, is in the process of setting up Quality Improvement Teams in practices and outpatient clinics in Illinois. They facilitate an in-service to practices helping them understand why families should be more involved, and how the practice can get them more involved. The practice and several families then fill out the Medical Home Index (produced by The Center for Medical Home Improvement), score it, and host a series of improvement meeting using the facilitator's guide (Developed by the DSCC). For more information on the process or progress of the teams, please contact Angie Pitts ampitts@UIC.EDU or Shelly Roat sroat@UIC.EDU, project facilitators for the program.
  
  Organizations/Resources:
• Maine Parent Federation (www.mpf.org/) facilitates meetings for the Rural Medical Home Improvement Project (RMHIP) advisory group at a a local Pediatricians office. They are not a parent advisory group but rather an advisory group to the practice as they attempt to improve the supports to families of children with special health care needs. The group consists of 2 parents, 2 staff and 2 pediatricians.
  
  MPF was contracted with by the Hood Center for Children and Families at Dartmouth Hospital in NH. The Center provided initial funding to set up the group, but the funding has recently ended. They have found a minimal amount of money to continue the project through the support of their CSHN program. The funding is used to pay parents a small stipend; provide funding to the pediatricians office to pay for additional staff time to organize the project and take a leadership role in Care Coordination for the families enrolled in our Medical Home Improvement project. In their case only one staff person is paid, the other staff donates their time as well as the pediatricians.
  
  In order to assure a sense of equal participation and importance of the contributions of each team member they established a few guidelines:
  
  - Paying the Parents - $10/hour for 11/2 hours of meeting time , so parents receive $15 for each meeting.
  
  - Each meeting has to have a representative from each of the 3 categories (parent, staff and physician) in order to be an official meeting. For example, if neither parent can attend and they know this in advance, they cancel the meeting. If they arrive at a meeting to discover that one category of participants is missing then they hold the meeting but only make recommendations, no final decisions and review the recommendations at the next meeting.
  
  -Though this has not been a spoken guideline, they refer to each other by first name. (This is a suggestion made by the group after observing another group where the parents continued to refer to the physician as Dr. and everyone else was addressed by their first name, it seemed to create almost a class differential and believed to change the nature of their participation. Leveling the
  playing field as much as possible is their recommendation.
  
  The group began meeting twice a month for 11/2 hours and currently meets once a month. Parents and staff are motivated to attend by the work they accomplish. Run the meetings fairly formally, particularly during the first year, until a good working format is established . Designate the role of facilitator which involves being the link with the outside agencies (Hood Center and CSHN), keeping folks on task by reminding them of the goals of the group and helping parents and staff to be comfortable with sharing their opinions/ ideas.
  
  Recommendations:
  Begin each meeting with: 1.) Assignment of roles: leader, recorder, timekeeper and facilitator. 2) Set the agenda items and assigned an approximate time to work on each one ( this provided the timekeeper with guidelines for tracking the conversation). 3.) For each agenda item, describe the action that needs to be taken, follow-up that is needed and identify who will take primary responsibility.
  
  At the conclusion of the meeting: 1.) Clarified the agenda for the next meeting. 2.) Plan a date of the next meeting and evaluated what was liked about the meeting and what you need to do differently. (This end of the meeting work should be about a 5 to 7 minute discussion).
  
  The team believes that a critical piece of making this work is having a paid staff person who has time to devote to the projects that are underhand. Without that support, it is hard to say if the parents or group will be able to maintain invested interest in the group.

  This is basic information about how Maine started and maintained their group. They have relaxed the format a little, since they have become more comfortable working together. Feel free to contact Bev Baker, Coordinator of Family Support Projects, Maine Parent Federation bbaker@mpf.org with additional questions.

• Family-to Family Health Advocacy Center and Family Voices of Minnesota www.pacer.org/ has had quite a bit of experience setting up parent advisory groups in a couple of different settings, including two children's hospitals, and their Title V agency. For more information on how valuable parent advisory groups are or how to form an advisory committee please contact Carolyn Allshouse, PACER Center at callshouse@PACER.org
  

• The Institute on Family Centered Care has developed a tool called A Patient and Family Advisory Council Workplan: Getting Started. The tool lays out initial steps for starting a council, from identifying staff and stakeholders, recruiting for a council, to maintaining and ensuring success of a council. The tool was developed as a handout for a seminar. - Advancing the Practice of Family-Centered Maternity and Newborn Intensive Care, hosted by the Institute on November 16-19, 2003, in Grand Rapids, MI.
  
  
• The State of Florida, Department of Children and Families RCMA Beyond Barriers Project has done several advisory groups and can offer some good ideas and important considerations when forming such a group. For additional information, please contact Michael Topps, Project Director, miket@rcma.org
  
  Additional Resources
• The Title V Toolbox for Family Participation located on the Family Voices web site has materials created by states to develop family advisory committees or councils including descriptions, guidelines, by-laws, and information forms. You can access this information on the Family Voices web site at www.familyvoices.org/toolbox/FAC.html
  
  
• Resources on Involving People with Disabilities as Members of Advisory Groups
  Rural Practice Guideline from the Montana Disability and Health Program - March 2004; Revised July 2004
  
  This Guideline offers suggestions and a lot of great resources on how to involve people with disabilities as active members and advisors of local and community groups.
  
  Topics covered include:
  Educating Yourself and Your Group, Recruiting Participants, Providing Accommodations and Access to Meetings, Physical Access, Information Access and Exchange, Additional References and Resources.
  
  For more information, visit: rtc.ruralinstitute.umt.edu/advocacy/Advisory.htm

Last Updated March 14, 2007