Oral Health Partnership Core Group Meeting July 15, 2016

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Presentation transcript:

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

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

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?

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!

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]

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)

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

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)

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.

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

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

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

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?

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

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.

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?

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

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

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