PARENT ADVOCACY GROUPS:

Transcription

1 PARENT ADVOCACY GROUPS: A BRIEF SUMMARY Susan L. Weiner, PhD President and Founder Children s Cause for Cancer Advocacy December 12, 2012

2 Basic Premises of Parent Advocacy I. Advocacy Activities Service Delivery: Education, information and support Involvement in Research Public Policy II. Essential ingredients for new parent advocacy efforts

3 Premise 1 Advocacy based on core parental obligation: Save life of one s child Corollary objectives: Minimize suffering Normalize his/her life Requirement to share these obligations/responsibilities with strangers the experts

4 Premise 2 Responsible parent advocacy emerges from ability to extract the general from the personal, to abstract the issues from individual life experiences

5 I. Advocacy Activities: Service Delivery Information and Support Pioneer examples: Disease pamphlets (NORD); Patient conferences (ABTA); parent to parent networks (various) Current examples: Access to Credible Genetics Resources Network (Genetic Alliance); Elements of Care, online management tips for Duchenne s (PPMD)

6 Service Delivery Education and employment Pioneer: UCP, AHRC, LDA Current: CBTF survivors employment program, special schools, MMFS Improvements in delivery of care Palliative care (St. Jude) Environmental changes in hospital settings Services in long term follow-up clinics for cancer survivors

7 Advocacy Activities: Research Raising and awarding funds for research Gives families rapid and gratifying direct feedback Includes families influence and goals in: Research priorities Continuum of research from basic to clinical Types of grants and awards (RO1s, consortia)

8 Research Engagement in conduct of clinical research Review of protocols to assess trials feasibility in family/child reality (COG, PBTC) Modification of trial design Consent review

9 Research Recent growth of Venture Philanthropy for rare and orphan childhood conditions Parent advocate organizations as agents of drug development Priority setting with clinicians essential Now diagnostic and treatment research necessary Treatment costs for patients unresolved issue Expensive and slow research process Engages the federal agencies

10 Advocacy Activities: Public Policy Lack of economic incentives for rare diseases Promise of personalized medicine Drivers Rapid pace of scientific discovery New debates about ethics of research in children Changing healthcare systems

11 Public Policy Parents groups engaged in full panoply of public policy issues: Federal funding Drug approval process Parents advocacy strategies increasingly sophisticated: Congressional lobbying, National advisory committees Workforce training and development Political engagement Open data access

12 II. Start-Up Elements for Parent Advocacy Groups Leaders Community Professional Engagement Resources

13 Start Up Elements Leaders ID individuals with natural leadership talent Overlap of personal experience and professionals skills (when possible) Individuals with discretionary time - volunteer workers Passion to alter the landscape of the home disease

14 Start Up Elements Community Identification by disease, treatment location, neighborhood, ethnicity Essential bonding of parents essential: look in the eye Mutual respect as the key consequence

15 Start Up Elements Key but limited engagement of professionals Support not control agenda Share standards of professionalism as model Advise but assume peer status Offer guidance about practicalities, e.g, easy fundraising ideas, referrals to other systems, professionals and associations

16 Start Up Elements A few back office resources Printer Copier Online capabilities

17 Conclusion Families as fertile and varied resources of skills and knowledge capable of enhancing the research enterprise Technology will increase number, growth and power of groups Families positions are unconflicted with professionals interests Have an incontrovertible moral advantage of their child s disease experience: sets them apart