True Patient & Partner Engagement How is it done? How can I do it?

Transcription

1 True Patient & Partner Engagement Hw is it dne? Hw can I d it? GROUP TECHNICAL ASSISTANCE JANUARY 18, 2017 COLORADO FOUNDATION FOR PUBLIC HEALTH AND THE ENVIRONMENT

2 Webinar Objectives 1. Describe patient and/r cmmunity engagement within research. 2. Describe hw CBPR principles apply t yur prject. 3. Plan fr hw t engage patients and/r cmmunity members as equal partners in research. 4. Recgnize the strengths and weaknesses f full patient engagement and partnerships in research. 5. Plan fr the apprpriate time and resurces within prjects t apprpriately engage partners within the research. 6. Identify ways t use the P2P Prgram deliverables as a means f facilitating engagement amng partners.

3 Defining Partnerships Legal definitin: A vluntary cntract between tw r mre cmpetent persns t place their mney, effects, labr, and skill, r sme r all f them, in lawful cmmerce r business, with the understanding that there shall be a prprtinal sharing f the prfits and lsses between them. In ur cntext: The persns being patients, stakehlders, and researchers Emphasis n the prprtinal sharing T achieve patient and partner engagement, PCORI research is centered arund cultivating authentic partnerships

4 Defining Engagement in Research PCORI definitin: Engagement in research is the meaningful invlvement f patients, caregivers, clinicians, and ther healthcare stakehlders thrughut the research prcess. This means invlving these grups frm tpic selectin ding the research sharing results back with the cmmunity. Want examples? View the PCORI Webinar: Prmising Practices f Meaningful Engagement in the Cnduct f Research - /130919/ There are many different kinds f stakehlders! View this table f hw PCORI defines stakehlders -

5 What Des a Partnership Lk Like? The fur elements that help define an authentic partnership: 1. Guiding Principles f Partnership 2. Quality Prcesses 3. Meaningful Outcmes 4. Transfrmative Experiences Frm the evidence-based mdel frm the Cmmunity-Campus Partnerships fr Health -

6 Partnerships & The Time it Takes Stage 1: Explratin and Discvery Stage 2: Infrastructure Building Stage 3: Perfrmance f Missin Wrk Stage 4: Celebratin and Reflectin Stage 5: Higher Levels f Partnership Partners find cmmn grund and and set expectatins fr the partnership Partners create the wrking relatinship and structures that becme the platfrm fr wrk The cre, where the partners perfrm the wrk, giving all the rest f the stages meaning Partners celebrate success and reflect n failures Push the partnership t a higher level and apply the relatinship t ther scial change agendas. Read abut this mdel in actin frm the West Virginia Rural Health Educatin Partnership:

7 The PROS and CONS PROS CONS Findings will be culturally and lgistically acceptable t the ppulatin f interest. Recruitment int the research will be better. Partnership synergism will create greater benefits and mre rbust utcmes ver time. Capacity t sustain mmentum during unfunded times will be greater and mre prductive. Systemic changes and unanticipated new prjects will be generated rganically. Building partnerships and trust takes time and dedicatin. Natural cnflicts must be dealt with penly and ften, with the gal f turning the cnflict int prductive negtiatin and cmmn understanding within the partnership. Institutins based n traditinal research may nt understand the value f patient and cmmunity engaged research. Traditinal research jurnals and ther publishers may nt understand the imprtance f the patient and cmmunity vice and authrship.

8 The benefits f Engaging Patients & Cmmunities in Research Ensures the right questins are answered and that thse answers will be acceptable and mre quickly adpted by patients and spread thrughut the brader cmmunity they represent. Engaging patients and their cmmunities, as partners, in research can reduce the fear and mistrust that can inhibit quality research frm ding the gd it intends. Wrking with patients and their cmmunities t publish the findings f research adds credibility t the research amngst thse wh need it mst.

9 S, hw can I create these authentic partnerships?

10 Cntinuum f Research Engagement Cnsultatin Invlvement Shared Leadership Patients and cmmunities are asked t prvide infrmatin Examples: Surveys Fcus grups Patients and cmmunities are asked t participate in advisry rles Examples: Advisry bard members Cnsultants Patients and cmmunities clead the research Examples: Cinvestigatrs Active gverning member This cntent was mdified frm Develping Interventins And Plicies Patient And Family Engagement

11 Set Apprpriate Expectatins Acknwledge the time it takes Cllectively define what kind f engagement yu are aiming fr. Knw what thers are expecting f yu, the situatin, and ther partners Use negtiatin, cnsensus, and agreement when nt everyne accepts each ther s expectatins. Find ut as clearly and early as pssible what the thers believe, want, and are willing t give. Be clear abut the purpses and gals f the effrt and wh yu want t engage. Neither yu r yur partners are mind readers! Cmmunicate these expectatins.

12 FOR ENGAGEMENT TO OCCUR, IT IS NECESSARY TO Build relatinships and get cmmitments frm frmal and infrmal leaders. Create space fr cllective self-determinatin as the respnsibility and right f all cmmunity members. Establish trust and actively maintain that trust ver the lng term.

13 ENGAGEMENT: Expectatins & Shared Gals Sharing gals increases their effectiveness. Shared gals enable greater cllabratin, cmmunicatin, and a greater degree f unity. Shared gals als help establish: Accuntability Prductivity Clarity Cperatin Make sure everyne understands what s in it fr them, and there is a real emtinal cmmitment t the achievement f the gals. One tl yu can use t define a shared gal: SMART gals Specific utcme Measurable Achievable Relevant Yu can use this grup activity t make SMART gals.

14 Back t P2P Hw t use yur deliverables t build and maintain partnerships that engage patients, researchers, and stakehlders

15 Recruitment Strategies Dcument Frm the Recruitment Strategies Guidance Dcument: The P2P Recruitment Strategies Guidance Dcument is a tl t establish agreement amng the stakehlders in yur partnership abut yur plans t braden the cmmunity f patients and ther ptential stakehlders wh are interested in participating in r supprting yur prject effrts. AKA: setting expectatins! This aligns with gd partnership develpment! Specifically (nt limited t): Open cmmunicatin Figuring ut hw t find yur partners Establishing reciprcal relatinships

16 Gvernance Structure Dcument Yur Gvernance dcument (finalized versin due in Tier II), can help yu frmalize expectatins and put them int writing regarding yur partnerships. Specifically, yu can map ut yur (but nt limited t): Shared Gals Transparency expectatins Decisin making guidelines

17 Evaluatin Measures Remember: All partnership develpment prcesses are unique The deliverables PCORI requests are intended t help and nt be busy wrk, s make them yur wn. Partnerships dn t have t use ur templates, but they d need t meet expectatins that we will evaluate them n.

18 Evaluatin Measures Frm the evaluatin dcuments PARTNERSHIP AND DISSEMINATION STRATEGIES: Awardee has created a list f effective recruitment strategies used t develp the partnership and descriptin f hw thse strategies can be translated int disseminatin strategies. GOVERNANCE DOCUMENTS: Awardee has develped a thrugh gvernance dcument that describes hw patients, researchers and stakehlders wrk cllectively t supprt patient-engaged CER prjects in their cmmunity.

19 Resurces Jagsh, Bush, Salsberg, et. al. A realist evaluatin f cmmunity-based participatry research: partnership synergy, trust building and related ripple effects. BMC Public Health (2015) 15:725 Carman, Dardess, Maurer, et. al. Develping Interventins And Plicies Patient And Family Engagement: A Framewrk Fr Understanding The Elements And Develping Interventins And Plicies. Health Affairs, 32, n.2 (2013): PCORI s engagement definitin: Authentic partnerships frm CCPHN: Assumptin exercises:

20 Questins? Cmments? Thanks fr jining us!