Table 1.

Challenges reported by one of the GRAPPA PRP.

  • Lack of stability and consistency in working group membership: Am I or am I not a member? Have the groups now changed? Just where do I belong?

  • Lack of ongoing involvement: Long periods of radio silence or blackout periods; not knowing the intentions, the whole process or when something would occur; resulting in lack of appeal or any commitment to the group.

  • Not seeing any results or knowing what happened. “Hello. I am still waiting…”

  • Indirect exclusion: Not having adequate information ahead of time so I can contribute wisely.

  • Dropped off e-mail chains: Disappearing off working group membership entirely or just missing necessary information or telephone call notifications. I strongly recommended that leaders establish “group e-mail addresses” right at the start to avoid this inadvertent error.

  • GRAPPA: Group for Research and Assessment of Psoriasis and Psoriatic Arthritis; PRP: patient research partners.