The Road to State, Regional and National Partnership Relationship Building: How to be on it and what to learn from others who are there

Objectives Understand the benefits of partnering with state, regional or national stakeholder groups Identify barriers to making these partnerships happen Acknowledge what you/your team bring to larger groups Examine ways to identify regional/state/national partners you may want to work with Consider next steps to being on the road to stat, regional and national partnerships

My Data Tier II awardees mid-project report- end of October 2015 what is happening now with state/national partnerships-current collaborations thoughts for the future with Comparative Effectiveness Research (CER) work Other partnership experiences with state/regional/national collaborations New knowledge that PCORI full funding applications require applicants to have a connection to a national, regional or state stakeholder organization

State/Regional/National Organizations- examples Non-profit with a specific disease, age focus For-profit research center Non-profit with same topic of interest/broader topic of interest that includes your topic within its “umbrella” Advocacy organizations for specific disease, communities of interest Health care organizations, public health Policy centers/Think Tanks Government entities National health and safety entities Organized Networks of state/national interest Academic Networks

What Does this Collaboration Look Like? Informal meetings- coffee, gatherings, phone updates Formal meetings- planned meetings with collaborators Webinars Annual meetings- national National organization rep join P2P-led conference Current partnership introductions Story sharing Poster presentations Social media event announcements Shared interest/discussion of Comparative Effectiveness Research (CER) Q’s

Benefits to You and Your Awardee Team Expand your work/message: Get the word out about your P2P PCORI project Opportunity to share, educate others about patient, language, specific community aspects of project Expand understanding of patient experience by expanding reach to others Promote patient-centered outcomes research Potential CER help: question development, generalizing results to larger population, access to/knowledge of larger clinical trials

Benefits to You and Your Awardee Team Increase connections: Links to resources- people, time, energy, money Help with recruitment/orgs known to patients- expand reach Discover groups of like minded others who have the same medical topic of interest

Benefits to You and Your Awardee Team Increase resources focused on your issue of interest: People Time Energy Money Trust

Benefits to You and Your Awardee Team Expand/enhance opportunities: Stay abreast of current practices in interest area Read articles, contact author to share both ways Host webinar promoting patient-driven research to medical community Help with CER brainstorming- reaction/reflection and additional ideas Sphere of trust expanded- state/regional/national partner connection to others expands your ability to reach beyond your current audience Introductions to other potential partners Expand potential for success

Benefits to State/Regional/National Partner Being seen as/being involved with patient-centered project Opportunity for innovation “Fit” with goal of doing more with patients Bring new CER patient- centered ideas to own organization Share work/new ideas to others Links to resources- expertise, people power, partnership offerings

Barriers to Partnering at the State, Regional and/or National Level- you are not ALONE! Fear of…. Time/timing Who starts partnering first Permanency

What You Bring to the Table PCORI/patient-centered focus Success with P2P funding for your intent and issue of interest Experience with collaboration Uniqueness that comes in many forms- perspective, experience, expertise, resource, education, skills Knowledge that you are valuable to others and others’ projects In partnership form, brings: strength, missing pieces, another lens/way of looking at things, more eyeballs on the message More!

Imagine the road you could take- Talk with your team- if there are barriers, name them Brainstorm all possible partnerships- are you there? Are there more? What’s missing? With each partnership think- how will it help you? What would a “good fit partnership” be? Look at alignment of values, opportunities, resources, roles, what you WANT Identify next steps for the road to “x” partnership Who approaches whom, what to say, how to make it a low(er) stress encounter Consider it a journey as well as a destination- by getting on the road you can at least see the possibilities

Summary State, regional, and national partnerships are worthwhile investments- you may already be on this road Knowing that it is a PCORI requirement in the future, take time now to think through “ideal fit” partnerships Being open to possibilities can expand your reach and message It is helpful to know where you might be stuck so that you can find ways to address your own barriers Know what you/your partnership brings to the table is a value to others Be open to others on the path to finding you

Thank you! And- any Q’s?