2. Lisa Simpson
I have documented that I have no
relevant financial relationships with
any commercial interests to disclose
or Conflicts of Interest (COIs) to
resolve.
4. AcademyHealth: Improving
Health & Health Care
AcademyHealth is a leading national organization serving the fields of health
services and policy research and the professionals who produce and use
this important work.
Together with our members, we offer programs and services that support the
development and use of rigorous, relevant and timely evidence to:
1. Increase the quality, accessibility and value
of health care,
1. Reduce disparities, and
2. Improve health.
A trusted broker of information, AcademyHealth
brings stakeholders together to address the current
and future needs of an evolving health system,
inform health policy, and translate evidence into action.
4
6. Trends & Demands
Fiscal environment
– Health care: need for value
– Research: sequester!
Demand for more timely, relevant research while
maximizing rigor
Expanding volume and variety of electronic data
(e.g. from EHRs)
Demand for consumer, patient, and other
stakeholder involvement in all phases
6
7. HSR 1.0
Health services research is the multidisciplinary field
of scientific investigation that studies how social
factors, financing systems, organizational structures
and processes, health technologies, and personal
behaviors affect access to health care, the quality
and cost of health care, and ultimately our health
and well-being.
Its research domains are individuals, families,
organizations, institutions, communities, and
populations."
8. HSR 2.0
What works?
For whom?
Under what circumstances?
At what cost?
And once we know what works,
How do we implement it?
10. Patient/Consumer Engagement
In care
In transformation
– At the practice level
– At the system level
In research
In research enterprise
11. Patient/Consumer Engagement
Patient centered outcomes research
Community based participatory research
Policy driven/relevant research
Systems driven/relevant research
13. A Framework for Consumer and
Patient Engagement (cont)
Source: Rein, A. Hamilton Lopez, M. Holve, E. Winkler, J. “A
framework for patient and consumer engagement in Evidence
Generation.” EDM Forum, AcademyHealth, August 2012.
14. What is Possible?
Partner with AcademyHealth
–Leadership Roles
–Funding Opportunities
–Meetings
–Fellowships/Scholarships
–Advocacy
15. What is Possible?
Partner with AcademyHealth
–Leadership Roles
• Advisory Boards & Committees
• Program Committees
• Consumer-Patient-Research
Roundtable
16. What is Possible?
Partner with AcademyHealth
–Leadership roles
–Funding Opportunities
• AcademyHealth/CUE Joint PCORI Submission:
Patient Consumer Research Academy (PCRA)
submission
17. What is Possible?
Partner with AcademyHealth
–Leadership Roles
–Funding Opportunities
–Meetings
• National Health Policy Conference
• Annual Research Meeting
• Annual Delivery System Meeting
• Annual EDM Forum Stakeholder Symposium
18. Conferences
Health Policy Orientation
– October in Washington, DC
– Limited to 50 participants
National Health Policy Conference (NHPC)
– February 3-4, 2014 in Washington, DC
– Nearly 700 attendees
Annual Research Meeting (ARM)
– June 8-10, San Diego, CA
– 2,400+ attendees anticipated
19. What is Possible?
Partner with AcademyHealth
–Leadership Roles
–Funding Opportunities
–Meetings
–Fellowships/Scholarships
• Innovators in Residence
20. What is Possible?
Partner with AcademyHealth
–Leadership Roles
–Funding Opportunities
–Meetings
–Fellowships/Scholarships
–Advocacy
21. AcademyHealth Advocacy
Interest Group
Facilitate interaction of individuals around
specific topics around shared interests
Cultivate “grassroots” community:
• Planning and facilitating annual “advocacy institute” at
ARM
• Hosting 1-2 advocacy webinars per day
• Participating in annual “Hill Day
Steering Committee meeting in December
To join IG:
– Go to your my.academyhealth.org page, click “Join/Edit
Interest Group Membership”
22. What is Possible?
Connect &/ partner with
AcademyHealth
Connect &/ partner with
AcademyHealth Members
23. What is Possible?
Partner with AcademyHealth
Members
– Become an AcademyHealth member
organization (affiliate)
• Contact jane.brookstein@academyhealth.org or
call 202-292-6754
25. EDM Forum
Electronic Data Methods
(EDM) Forum Goals
– Work with the community to
identify cross-cutting
• Challenges
• Opportunities
• Research priorities
– Provide opportunities for
collaborative learning
– Ensure widespread
promotion of tools,
techniques, and findings
Join the Discussion
Sign up at edmforum@academyhealth.org
26. In a Dynamic, Learning System;
Dissemination Must Address the Journey,
Not Just the Destination
HSR and medical journals
focus on research
results.
Not ideally designed for:
– Process
– Engaging non-research
audiences
– Discussion
– Quick turnaround
Stakeholders increasingly
perceive a need to rapidly
disseminate “street
knowledge”
eGEMS
– “Electronic publications
Generating Evidence and
Methods to improve
patient outcomes”
– Papers, visualizations, and
other media (audio/video)
that provide guidance on
the conduct of research
and QI are invited
– Submissions evaluated on
usefulness; credibility;
novelty
– Facilitates discussion and
collaboration
27. What is Possible?
Connect &/ partner with
AcademyHealth
Connect &/ partner with
AcademyHealth Members
The challenge for our field is to innovate in response to these trends.
This framework for patient and consumer engagement sets forth expanded opportunities for involving patients and consumers in comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). This framework builds on work by the EDM Forum and the CPR Roundtable, and was just published in August. Patients and consumers bring unique and critically important perspectives to the healthcare experience, and can be important partners in generating new evidence. The proposed framework supports this philosophy and proposes opportunities for engagement in an expanded spectrum of activities, including both technical and data infrastructure development and the conduct of research. This is a screen capture of an interactive diagram. Use your finger to navigate different parts of the framework and reveal underlying content.
Patients and consumers can engage in specific aspects of both technical and data infrastructure development and research through the following activities.
For partnerships, main points to consider: Who is the prime Who is the funding source
To provide a little more context about the Electronic Data Methods (EDM) Forum: Project funded by AHRQ through the recovery and reinvestment act of 2009 The Forum’s overarching goal is to advance the national dialogue on the use of electronic clinical data for the conduct of CER, quality improvement (QI), and clinical decision support by facilitating exchange and collaboration between the PROSPECT, DRN, and Enhanced Registry Projects. Specifically, we aim to Identify cross-cutting challenges, opportunities, and research priorities Provide opportunities for collaborative learning And ensure widespread promotion/dissemination of tools, techniques and findings Our strategies for translating and disseminating information include: Provide a hub of communication for ongoing dissemination of products. Creating a community that offers bi-directional information exchange and collaboration. Developing an accelerated process for peer-review and diffusion of information that is credible and timely.
However, there is general agreement that we need to find a way to rapidly disseminate “ street knowledge ” and the solution that has been identified through these same conversations is epublication. What do we mean by “ street knowledge ” ? This includes, processes, “ lab notes ” , best practices, challenges, and lessons learned generated through building infrastructure to conduct CER and PCOR using electronic clinical data. How much does “ impact ” matter if your; Research can be found (Google Scholar); Methods are transparent , and Can be unambiguously cited (H-index and ORCID)
