TABLE 4
FROM:
Newborn Blood Spot Screening in Four Countries: Stakeholder Involvement
Beth K Potter, Denise Avard and Brenda J Wilson
BACK TO ARTICLETable 4. Consumer or patient associations: strategies for stakeholder participation used and recommended in newborn screening policy literature
| Strategies used |
| Direct input |
| Co-sponsorship of NBS Task Force with American Academy of Pediatrics and others ((31), Genetic Alliance) |
| Workshops coordinated with US Centers for Disease Control and Prevention ((11, 35), CF Foundation) |
| Sponsorship of a special journal supplement on NBS (51) |
| Multi-disciplinary working group involved in developing policy, with clinician and researcher representation, input from patient/family representatives (Canadian CF Foundation) |
| Strategies recommended * |
| General need for inclusive policy development, with focus on the importance of considering the perspective of affected patients and families ((30), (45), UK Cystic Fibrosis Trust) |
| Highlighting the government's stated commitment to involving consumers in health policy development (UK CF Trust) |
| Need for government to work with consumer/patient associations (Canadian CF Foundation) |
| Need for specific outreach to affected families and underrepresented communities (45) |
| Need for cooperation between public and private organizations (49) |
| Need for community awareness of policies for storage of residual blood spots from NBS programs ((58), submission by Association of Genetic Support of Australasia) |
* We did not classify recommended strategies as "direct input," "indirect input," or "consultation," as recommendations tended to be too general for such categorization.
