Jul 4, 2019
Last week I was invited to attend and present at a Rare Disease Roundtable hosted by Health Catalyst and McDermott Will & Emery in Boston. A colleague from Aventria Health Group and I were there to talk about ways to enlist stakeholder collaboration throughout the rare disease patient journey.
When not hosting the show, Stacey
is co-president of Aventria Health Group, a marketing agency and
consultancy. Aventria specializes in helping pharmaceutical,
employer, pharmacy, and health system clients improve patient
outcomes by creating and leveraging collaborations with other
health care organizations. For more than 20 years, Stacey has
innovated better-coordinated health solutions benefiting all
stakeholders and, most of all, the patient.
00:43 The rare disease patient journey.
02:03 The burden to stay on top of clinical developments falls on
patients.
02:14 The major problem with patients tracking clinical
developments in rare disease.
03:42 Stacey’s personal journey with a rare disease.
06:19 These stories aren’t unique; there’s a hard reality around
rare disease management and treatment.
06:37 “Rare disease management takes stakeholder
collaboration.”
07:00 “Payers … need to pay for evidence-based approaches.”
08:04 Rare disease management requires coordination between points
of care.
08:57 The tough ask behind improving rare disease management.
09:41 Why Pharma is primed to affect organizational change.
10:50 “It is less about an individual patient … and more about a
population of patients.”
11:34 The effort required to collaborate to treat rare diseases has
to be less than or equal to the perceived reward.
12:06 “What Pharma needs to offer up is more than a molecule.”
12:47 Account managers, go to aventriahealth.com for blog posts on helping
account managers develop the skill set to create collaborative
relationships.
13:28 It is best to include clinical trial endpoints in the package
insert that reflect institutional and/or payer needs.