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  • About
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    • PIPC in the News
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    • The Data Mine
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    • Nevada AB 259
    • QALY Panel
    • QALY Briefing
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      • MFN/IPI Webinar 2025
      • Discrimination & Health Care
      • C & GT Webinar
      • ICER COVID Webinar
      • Value Our Health Briefing
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
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The PIPC Blog

PIPC Weekly Update - September 14, 2015

9/14/2015

 
In This Week’s Issue:
1. Join PCORI at the 2015 Annual Meeting - Scholarships to Cover Costs for Patient Organizations, click here to register for the event.
2. LAN: Abstracts Due Wednesday September 16 for LAN Summit! Click here to submit.
3. ACRO: Transforming Patient Centered Drug Development, Click here.
4. ASCO Briefing: Making Data Work for People with Cancer, see details below.
5. Senate HELP Committee Schedules Hearing on HIT: ‘Improving Care Through Patient Access to Their Records’, click here for details.
6. Care For Your Mind: Patient-Centered Outcomes Pave the Road to Wellness, click here to view the blog. 
7. PCORI Blog: Looking at ‘Outcomes Important to Patients’, click here to read the blog. 
1. Join PCORI at the 2015 Annual Meeting - Scholarships to Cover Costs for Patient Orgs
​

According to a recent announcement, “the [2015] PCORI Annual Meeting is now designated as a ‘Patients Included’ conference indicating that PCORI is offering  a limited number of scholarships to cover travel, accommodations and registration for patients and caregivers and also to waive registration fees  for patient and caregiver organizations… [individuals] are welcome to apply as well if you are a patient/caregiver or a representative from a patient/caregiver organization.”  PCORI explains that “the two-and-a-half-day conference will update our stakeholder communities on the highlights of our research portfolio, including early results of completed studies and reviews of important work in progress. It also will convene current awardees to share lessons learned in their work and feature a series of ‘mini-summits’ on some of our high-profile initiatives. The meeting will open with a joint half-day session developed in collaboration with at the Agency for Healthcare Research and Quality/Academy Health. The session will address key issues in how important new evidence clinical research can be most effectively disseminated to those who need the information and have it be taken up in practice.”  Click here to register for the event.

2. LAN: Abstracts Due Wednesday September 16 for LAN Summit! 

LOI's were due September 8, 2015, and proposed presentation abstracts for the Health Care Payment and Learning Action Network (LAN) Summit are due Wednesday September 16!  Regarding the October 26 Summit, MITRE states, "Join fellow innovators from health systems, health plans, consumer groups, large employers, federal, state, and local governments, experts and others who are designing or have implemented alternative payment models. At this first national stakeholder conference of the Health Care Payment Learning and Action Network, you will meet LAN Guiding Committee members, hear updates from the APM Framework and Progress Tracking Work Group, and engage with fellow APM innovators. This event is designed to support all stakeholders to successfully transition their organization or constituency to alternative payment models.” The LAN further notes that, "You can now submit your presentation abstract for consideration. The LAN is interested in learning about your new ideas, effective strategies, and creative solutions to help others transition their organization or stakeholders to new payment models that reward quality and value.” If you sent the LAN a LOI, submit your follow-up abstract for proposed presentations here.

3. ACRO: Transforming Patient Centered Drug Development

The Association of Clinical Research Organizations (ACRO) is kicking off its second annual CRO Innovation Month with the theme of "Transforming Patient Centered Drug Development." A series of videos describing how CROs are educating and engaging patients while implementing their suggestions into the clinical research process will debut this month with thoughts from subject matter experts from ACRO member companies. Click here for additional information.

4. ASCO Briefing: Making Data Work for People with Cancer

On Tuesday, September 15, the American Society of Clinical Oncology will hold a briefing entitled “ASCO’s Vision: Making Data Work for People with Cancer.” The event will be held from 9:00-10:30 a.m. in B-354 Rayburn House Office Building. Confirmed speakers include: Clifford Hudis, MD, FASCO, Memorial Sloan Kettering Cancer Center, New York, NY; Robin Zon, MD, FACP, FASCO Michiana Hematology Oncology, South Bend, IN; and Jack Whelan, Patient Advocate, Andover, MA. Please RSVP to: Katherine Flannigan [email protected]. 

5. Senate HELP Committee Schedules Hearing on HIT: ‘Improving Care Through Patient Access to Their Records’

The Senate Committee on Health, Education, Labor, and Pensions (HELP) will hold a hearing on Wednesday, September 16 at 10:00 am. It is titled "Achieving the Promise of Health Information Technology: Improving Care Through Patient Access to Their Records.”  Click here for additional information.

6. Care For Your Mind: Patient-Centered Outcomes Pave the Road to Wellness

A new post on Care For Your Mind highlights the importance of “working with a clinical care team that respects and understands the value of patient-centered outcomes… PCORI intends for research projects to be driven from the bottom up (from the people), not the top down (from the researchers). Instead of researchers deciding what needs to be researched and applying for grants to complete their projects, individuals and organizations representing them (such as DBSA) provide input to PCORI. This is accomplished through a series of stakeholder meetings. Once PCORI has published the patient-identified areas of interest, institutions submit proposals. PCORI awards grants to the institutions that best meet the patient-identified research questions.”  Click here to view the blog. 

7. PCORI Blog: Looking at ‘Outcomes Important to Patients’

As PCORI’s David Hickam, MD, MPH, explained in a recent post on The PCORI Blog, “one of our core beliefs at PCORI is that if studies look at outcomes important to patients and those who care for them, the results will help those stakeholders make more-informed healthcare decisions. So I'm pleased to pass along a particularly strong example of that approach, from a recently published paper reporting results of such a PCORI-funded study… To see what happens to patients during real-world medical care, the project used information from health and Medicare records of 12,000 stroke survivors to see whether those prescribed the blood thinner warfarin did better than those who didn’t receive that prescription… Patients made an invaluable contribution to the design of this research procedure. Focus groups of stroke survivors and other stakeholders led to a new outcome for the research team to measure. What they said is most important to them is ‘home time.’ This is the number of days when a patient is living at home, not hospitalized or in another institution.” Click here to read the blog. 

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