Sustainability of PATIENTS

Transcription

1 Sustainability of PATIENTS C. DANIEL MULLINS, Ph.D., UNIVERSITY OF MARYLAND LYNN D. DISNEY, Ph.D., UNIVERSITY OF MARYLAND AURELIA L. LAIRD, R.N., B.S.N., BONSECOURS MEDICAL CENTER MARCY FITZ-RANDOLPH, D.O., M.P.H. PATIENTS LIKE ME JENNIFER HUANG, Ph.D., WESTAT

2 DISCLAIMER This presentalon is supported by an Agency for Healthcare Research and Quality (AHRQ) Infrastructure Development Program in PaLent-Centered Outcomes Research (PCOR) R24 grant enltled: PATIENTS: PATient-centered Involvement in Evalua8ng effec8veness of TreatmentS (R24HS022135). The findings and conclusions in this presentalon are those of the presenters, who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this presentalon should be construed as an official posilon of AHRQ or of the U.S. Department of Health and Human Services. 2

3 Updates AHRQ others 3

4 Aims of PATIENTS 1. Foster SUSTAINABLE partnerships with local, regional, and nalonal communiles of DIVERSE palents and healthcare systems 2. Conduct and expand PCOR in PARTNERSHIP with palents and healthcare delivery systems 3. Advance DISSEMINATION and IMPLEMENTATION strategies for PCOR findings 4

5 PATIENTS Partners 5

6 What is Sustainability? Able to be used without being used up or destroyed Able to last or conlnue for a long Lme 6

7 Two Parts to Sustainability Sustainability of partnerships Foster sustainable partnerships with local, regional, and nalonal communiles of diverse palents and healthcare systems to improve PCOR, inveslgators cultural competency and, ullmately, health outcomes Financial sustainability Money Infrastructure 7

8 Research Funding Mapping and Resourcing PaLent and Stakeholder Engagement along a 10-Step PCOR ConLnuum Framework (PI: Mullins PCORI ) Stakeholder engagement subcontract to UMB to support a University of Penn PragmaLc Randomized Trial of proton v. photon radialon therapy for Non-MetastaLc Breast Cancer Receiving Comprehensive Nodal RadiaLon (PI: Bekelman PCORI 2015) Methods for PrioriLzing Surrogate Desired Health Outcomes for PaLents (PI: DosReis PCORI ) Methods for PrioriLzing Surrogate Desired Health Outcomes for PaLents: Engaging Sustainable Partnerships in the Hispanic Community (PI: DosReis PCORI) PaLent-Centered Research for Outcomes, EffecLveness, and Measurement (PROEM) (PI: Perfejo, PhRMA FoundaLon) PCOR Training for Non-usual Suspects: A Program for Rare Disease PaLent Advocates (PIs: Mullins, Perfejo PCORI 2015) The Family VOICE (Value of InformaLon, Community Support, and Experience) Study (PI: Reeves, PCORI 2012) 8

9 K Awards Enhancing Clinical Guideline Development via PaLent and Stakeholder Engagement (PI: Armstrong AHRQ K08) PrioriLzing Quality Improvement for the Treatment of Psychiatric Disturbances Following TraumaLc Brain Injury (PI: Albrecht AHRQ K01) 9

10 Pending Proposals Physical TelerehabilitaLon for People with MulLple Sclerosis (Wallin-VA) A Randomized PragmaLc Trial Comparing the ComplicaLons and Safety of Blood Clot PrevenLon Medicines used in Orthopedic Trauma PaLents (O Toole-UMMC) Minding the Gap: A PaLent Centered Approach to Reduce DispariLes in Perinatal Depression (Shaya-UMB) Privacy-Preserving Distributed Data Stream Mining for CER/ PCOR (Chen-UMMC) Engaging PaLents in Care (EPiC) TransiLons (Tepper-UMMC)) A ComparaLve EffecLveness Study of Two Evidence Based IntervenLons for Seniors at Discharge from Skilled Nursing FaciliLes (Khanna-UMMC) 10

11 Pipeline to Proposals 8 submijed, 3 invited to submit full proposal: Senior Companions CollaboraLve Dialogue on the Use of Primary Care in Chronic Disease Management, Bon Secours Medical Center Developing PaLent Centered Research to Compare Evidence Based Approaches to Pharmacotherapy Adherence during Reentry, Delaware Department of CorrecLons 11

12 Eugene Washington Proposals The PaLent Voice in Cultural Diversity Training for PaLent Centered Outcomes Researchers (Carter- Pokras-UMCP) Clinician ParLcipaLon in PCOR: Defining a Framework for More EffecLve Engagement (Tambor- CMTP) 12

13 Financial Sustainability Grants and contracts Independent fundraising Strategic partnerships Independent center 501(c) (3) 13

14 Bon Secours Health System What has gone well in this partnership? Trust, respect and sharing the same vision of co-crealng healthy communiles by working in collaboralon with a broad range of consltuents and stakeholders including community residents. What are some lessons learned? To build on our individual and colleclve capabililes as well of that of our partners and stakeholders as we commit to seeking new opportuniles for sustainability and partnership early in the research or grant process. 14

15 Bon Secours Health System What do we want from a research partner? We will like honesty, transparency, trust and respect. A partner that is able to recognize our strengths as well as our shortcomings and share with us. Partners that are willing to teach and work with us to maximize our potenlals and strengths. Partners that are knowledgeable in areas that we are lacking. To assist us in building a sustainable and realislc infrastructure. Teach and assist us in wrilng proposals that will lead to genng grants funded. 15

16 PaLents Like Me What has gone well with this partnership? BidirecLonal learning Exploring new grant partnerships for new kinds of projects What are some lessons learned? Teaching about PLM ( not just a survey ) Matching projects to strategic company goals 16

17 PaLents Like Me What do we want in a research partner? A focused research question The willingness to involve PLM in development of the project, methodology, communications, etc. A desire to reflect patients experiences and knowledge, even if this means changing a planned project Good communications (single point of contact is excellent Ideas for funding sources 17

18 Westat What has gone well in this partnership? Building on strengths and resources of UMB and Westat CollaboraLng on strategic planning aclviles (e.g., developing a program logic model) What are some lessons learned? Importance of developing, implemenlng and maintaining a system to track outputs 18

19 Westat What do we want in a research partner? Common research goals and praclces CollaboraLve, equitable partnership in all phases of research Ability to foster co-learning and capacity building among all partners Ability to sustain the relalonship through addilonal research aclviles (e.g., proposals, projects, disseminalon aclviles, work groups) 19

20 What we ve done right within UM All dean s aware and faculty engaged across schools CER/PCOR work group details CER/PCOR summer insltute Number of proposals submijed/supported, etc. Dean s funds Pumpian lecture-freda Lewis-Hall Be as commijed to funding partners as funding our staff 20

21 QUESTIONS AND DISCUSSION 21