Health Care Access & Finance Work Group Minutes
May 20, 2016
On the call: Meg Comeau, Chair; Peter Antal; MaryAnn Gordon; Monica McClain; Martha-Jean Madison; Betty Morse; Karen Smith; Bonnie Thompson, Tara Townsend;
Agenda: Survey analysis fact sheet
Annual work group meeting debrief
Future leadership and of the work group
Survey analysis fact sheet
Ashley Hamill, LEND trainee, developed a fact sheet (find it here) from her analysis of our survey including highlights and graphs. Ashley did a nice LEND Capstone poster presentation on her work.
How will we assess the impact now that the information is posted to the NEGC website?
· We can track hits to a web page but not how many individuals download the document.
o Meg thought web hits is a good enough measure. Would like a report back to the group in six months.
· Peter – are there other products we want to produce that we can also track?
· Are there other ways we can share the information?
o Meg will share with the NCC HAF group.
o Martha-Jean will post on the NH FV website where they highlight activities.
· Meg agreed we should let the people who filled out the survey know about the report.
Annual work group meeting debrief
Meg led a discussion to get feedback on our annual work group. Notes from the meeting have already been sent around.
What stood out as positives?
· Education component
o MaryAnn found questions asked and answers to be helpful, especially ERISA related.
· Nice to have a full room with people beyond the group
· Many areas for follow up which may come down to informational publications for families
What could be improved?
· There could be even more overlap with other work groups; lots of opportunity for collaboration, like with Medical Home group re: care coordination.
Do we want to do another policy brief with these survey results like we did after our first survey?
· Bonnie suggested looking back at the first brief: did we reach our goals with it?
o Meg – dissemination was good. With regard to actual outcomes, content was well-received but research project wasn’t as good as she would have liked (not enough responses). We understood this and made adjustments in next survey. We were contacted by policymakers but she doesn’t know of any specific policy change.
o Peter – it’s hard to know; would like to send out brief follow up to see if it was useful.
o MaryAnn had request to resend the policy brief for current discussion. Good news.
o Tara – RI legislature just created commission to study services for rare genetic diseases. She’ll follow up to share the brief now. It’s mostly for adults but that could change.
o Bonnie – good to know if our brief has value as they go forward. Suggested we create a questionnaire for those recipients; Peter agreed.
· Tara – thinks it would be difficult to put the current survey into a policy brief.
· Bonnie wants to see the fact sheet first. Suggests we distribute it widely.
· Meg – it’s good idea to sharpen our impact assessment activities. We probably want to think more about impact assessment methodology in the future, not just for this project.
o For now, let Karen know if you’re reaching out about the fact sheet or policy brief so she can track it.
o Peter – currently impact assessments are done on individual RC basis, not a consistent methodology across the NCC network.
Future Leadership of the HAF work group
Meg let the group know that she is reluctantly transitioning out of her role chairing the work group. We’re looking for someone to pick up the role, also looking for thoughts on how it’s currently working, goals and objectives.
· Should we broaden our membership?
· We will continue meeting monthly with emails in between.
· Let Karen know if you are interested in chairing or co-chairing the group.
o Think of this next year as wrapping up the current 5 year funding cycle (ending 5/31/17), and thinking strategically about how to best position the work group for the reapplication process with HRSA.
o An important piece for chair is leading activities, but Karen and the core team can help.
· Karen will set up a virtual folder in Box for sharing documents, look for an invitation.
Setting the agenda for our future work
§ Perhaps we should go back to both of our past surveys and see what rises to the top and can be addressed with educational materials for families.
· MaryAnn – struck by information we got from Violet, maybe we should put this in graphic state-by-state “cheat sheet” on appeals
o Not so much policy brief as issue brief; this could wrap up the year
· Focus on Durable Medical Equipment (DME) including appeals
· Bonnie – the overlap with medical home group and care coordination creates opportunities. A lot is happening right now and so much is in flux. Reimbursement for care coordination is of great interest. Visualizing payment models is useful. It is in part a finance issue.
o Martha Jean – network adequacy as well
o Karen could this be our strategic planning for next 5 years?
§ Bonnie – if we could look at it as forecasting issue
o Meg is part of a webinar coming up on the topic. A lot of the work to date looked at who should be doing care coordination. Now it’s recognized that it should be paid for. Families know there are challenges to care coordination but do they see it as reimbursements issue for providers, or is this a provider issue?
§ Bonnie – see it as part of the package but not codes, etc.
§ Martha-Jean – we need to identify what a care coordinator does that is different than a parent; parents see the issues when child turns 26.
§ Meg – families fill the gap for free so there isn’t incentive to change. Maybe there is an education piece we can do. Providers have been talking about reimbursement, but if families join the call it might have an impact. This might be a topic area where we can uniquely have an impact (both as Advocates and advocates).
Wrap-up
Karen, Peter and Monica will develop a work plan and send to the group for review.
§ Appeals
· DME
· Reimbursement for care coordination
Let Karen know if you may are interested/willing to chair or co-chair the group, even if just for this year.