1. Oral Health Partnership Core Group Meeting July 15, 2016
Seven Hills Foundation and
Tufts University School of Dental Medicine

2. Overview of Project Workplan
PCORI funding: Background and definitions
Accomplishments to date
Changes in Tier II
Tier II deliverables
Oral health influences we’ve discussed so far

3. PCORI Tier II Award – May 1, 2016 – April 30, 2017
Patient Centered Outcomes Research Institute (PCORI)
Funds partnerships to give patients a role in designing health studies that are “patient-centered and useful in the real world by regular people.”
“Patients: Persons with experience with an illness/ condition, their caregivers/family members, and advocates
Oral Health Partnership focuses on preventing and managing oral disease in adults with IDD
Can we come up with new ways to prevent oral disease and ‘test’ them to see if they improve oral health?

4. Oral Health Partnership: Pipeline to Proposal (P2P) Award
Funds 3 tiers, each designed to help Partnership take another step toward developing a research proposal
Tier 1: Form Partnership: Bring together patients, family and paid caregivers, other ‘stakeholders,’ health care professionals, & researchers with a shared interest in a health problem
Tier II: Build Partnership’s research capacity: Share knowledge & perspectives, identify what matters most to patients, broaden network of people involved in partnership
Tier III: Ask research questions that compare and contrast different ways to prevent or manage health problem: Pull together everything Partnership needs to prepare a research proposal
We‘ve made it to Tier II!

5. Tier I Accomplishments
Formed a partnership involving adults with IDD, family and paid caregivers, advocates and others who are committed to working together to improve the oral health of adults with disabilities
Developed guidelines on how we’ll work together moving forward [Jan. 22, 2016 meeting]
Collaborative Operating Agreement [Governance Structure]
Drafted recruitment strategies plan focused on who else we’d like to include and how we can reach them [Jan. 22, 2016]
Drafted a list of important influences on oral health of adults with disabilities, both inside and outside the dental office [several meetings]

6. Changes in Tier II
New organizational structure shifts responsibility from TUSDM to SHF
Sub-contract between TUSDM and SHF supports new organizational structure
New Executive Committee guides Partnership activities
Members: Liz Vittum (chair), Joe Realbuto, Joe Ricciardi, Jenn Keaney, Josh Capiga, John Morgan, Marie Burack, Paula Minihan
Holds scheduled conference calls every other month
The Partnership (this group) is now called the “Core” Group/Oral Health Partnership
Meets face-to-face every other month (six meetings)

7. Changes in Tier II (cont.)
New roles
Liz Vittum: PCORI liaison at Seven Hills
Jenn Keaney: Site Coordinator
Formally recognizes her role facilitating full participation of ASPiRE! participants
Josh Capiga: Communication Coordinator Refine recruitment strategies plan and develop communication plan
Joe Ricciardi: Researcher
Support efforts to build research capacity

8. Tier II Goals – ‘Building Capacity’
Build capacity so that group – by end of year – is able to generate a research question focused on improving oral health for adults with IDD
Research question has to be built on ‘evidence’, i.e., focuses on interventions that have been ‘proven effective’
To do this, we need to expand what the Partnership knows about:
Oral health – and interventions that have been shown to be effective in preventing dental disease and promoting oral health
Research – and asking research questions (Joe Ricciardi and Matt Finkelman and Sara Pagani, TUSDM biostatisticians, will help)

9. Tier II Goals – Expanding Membership
We need to expand membership to build a broader and wider partnership
Policy makers
Public administrators
Advocates (disability, oral health)
Josh’s communication plan is essential to broadening membership and making others aware of this effort.

10. Oral Health Influences – Process in Tier I
In small groups, we generated a long list of influences on the oral health of adults with IDD
The list was circulated with a request to :
identity the ‘top 5;’
make suggestions for addressing these influences and note if you consider the suggestions doable or not; and
list what additional information you’d like to have moving forward

11. Oral Health Influences
Individual & caregiver influences
Genetic factors/meds that increase risk
High sugar diet
Unhealthy behaviors
Uncooperative behaviors
Brushing teeth at least 2x/day
Flossing teeth at least 1x/day
Dental care influences
Scared/anxious about visiting dentist
Financial barriers re: visiting dentist
Barriers to visiting dental specialists

12. How Doable is it to Modify Influences?
Individual & caregiver influences
Genetic factors/meds that increase risk – mainly doable
High sugar diet – mainly doable
Unhealthy behaviors – mainly doable
Brushing teeth at least 2x/day – mainly doable
Flossing teeth at least 1x/day – mainly doable
Dental care influences
Scared/anxious about visiting dentist –
Suggestions based in residence – mainly doable
Suggestions based in dental office – not so doable
Financial barriers re: visiting dentist – not so doable
Barriers to visiting dental specialists – not so doable

13. What Additional Information Would You Like to Have?
What’s the effectiveness of the following interventions on oral health?
Brushing 2x/day
Going to the dentist regularly
Mouthwashes and toothpaste
Does DDS require individuals to incorporate oral health into their ISP?
Does SHF require and train staff to ensure participants in group and shared living homes brush properly and regularly?
Which adaptive tools are available and how are they used?

14. Research Idea 1
What is the impact of new measures to reduce difficulties associated with visiting the dentist on oral health status?
The Partnership identified the following measures as having potential impact:
Reduce patient fear/anxiety
Change Medicaid reimbursement policies
Implement individual treatment plans based on personal risk factor assessments
Develop dental ‘house call’ programs using portable dental sites in day programs for people with IDD
Create oral health cultures within residences that encourage individuals to want to go to the dentist

15. Research Idea 2
What is the impact of improved oral home care practices on oral health status?
The Partnership identified the following measures as having potential impact:
Train caregivers in proper oral home care techniques
Create oral health cultures within residences that encourage adults with IDD to brush their teeth properly at least twice/day with flouridated toothpaste and to floss at least once/day
Duplicate Adult Day Health Program involving nurses who teach patients via small group demonstrations and self-monitoring charts and apps in day programs for adults with IDD
Increase availability of adaptive dental tools.

16. Scientific Evidence for Prevention of Oral Disease
PCORI requires we use evidence based information to develop our research question
Summary
No studies to show effective prevention of caries or gum disease in those with intellectual and developmental disabilities (IDD)
Should we consider the evidence for prevention of oral diseases in those without IDD ?
What evidence do we have?

17. Studies –Preventing Decay
Children
Fluorides prevent decay in children
Toothpaste, rinses, gels and varnishes are effective
Disease management effectiveness for early childhood caries – working with parents and caregivers
Few studies for effective use of fluorides in adults
Recent fluoride studies/medically compromised Veterans
Self applied or professionally applied fluoride
Reduced caries
No studies for fluoride use in those with disabilities
No studies for disease management in adults with disabilities

18. Studies - Preventing Gum Disease
No evidence to support professional cleanings prevent periodontitis (gum disease)
Repeated thorough oral hygiene instruction can achieve a benefit similar to professional cleanings
Infrequent tooth brushing was associated with periodontitis (gum disease)
No studies in those with disabilities

19. What is Best Way Forward
PCORI - use the evidence that is available
We could use the evidence known and apply it to our group
We go in a direction without scientific evidence
Either way PCORI should hopefully give advice