September 2009 council Currents
NHC Updates
- NHC Takes the Patient Message to New Leadership at FDA, OMB
- Campaign to Put Patients First
- Promoting Innovation
- Intellectual Property, Biosimilars, and FDA
- Appropriations
- Comparative Effectiveness Research
- Electronic Personal Health Records
- NHC-NIH Collaborative Research Database
Inside the NHC
- 2009 Management Compensation Survey
- Reducing Out-of-Pocket Costs
- Chief Scientific/Medical Officers and Research Directors Meeting
- 2010 Voluntary Health Leadership Conference
- BoardSource Partnership
- International Alliance of Patients’ Organizations
- The Center for Information and Study on Clinical Research Participation
- Presentations by NHC Staff
- AAHRPP
2009 Management Compensation Survey
To help member voluntary health agencies better hone their recruiting and retention efforts, the National Health Council annually releases a benchmarking report of compensation practices across a spectrum of more than 90 mid-level and executive positions. The report, a joint effort by the NHC and the National Human Services Assembly, includes data from both VHAs and human service organizations, such as the Salvation Army.
This year 33 NHC members participated in the survey making it the highest participation since the reports inception. The final report will be published in October. In keeping with past practice, one free copy of the Management Compensation Report will be sent to all participating VHAs. For all others, the report will be available at the member price of $100 ($125 for nonmembers).
Reducing Patient Out-of-Pocket Costs
The National Health Council is running a series of ads encouraging Congress to pass health care reform legislation that will reduce the burden of out-of-pocket costs on patients. The ads have appeared in Politico, Roll Call, and the Washington Post newspapers, and in USA Today. This is a similar message of the Better Health Care by Design initiative, of which the NHC was a founding organization.
Individuals concerned about the cost of health care are encouraged to register for a free, weekly e-publication that provides a timely snapshot of media reporting and analysis on the issues surrounding the impact of out-of-pocket costs on people with chronic diseases and disabilities and their family caregivers, providers, and employers. To subscribe to the Better Health Care by Design e-newsletter, go to http://www.smartbrief.com/bhcbd. To view past issues, click on Archive.
Chief Scientific/Medical Officers and Research Directors Meeting
The annual meeting of our chief scientific medical officers will be Tuesday, October 6, from 10:00 a.m. to 4:00 p.m. at the NHC office. To RSVP for the meeting, please email Kelly Clapp at kclapp@nhcouncil.org.
2010 Voluntary Health Leadership Conference
The National Health Council’s 23rd Annual Voluntary Health Leadership Conference will be held at the Omni Tucson National Resort in Tucson, Arizona, February 10-12, 2010. Please visit the resort’s website at www.omnitucsonnational.com for more information about the facility. Questions regarding hotel reservations or the conference should be directed to Donna O’Leary at oleary@nhcouncil.org.
BoardSource Partnership
The NHC has ended its 2009 BoardSource membership drive for its nonprofit members. BoardSource membership provides everything a nonprofit organization needs to build a high-performing board. Members use its resources and services to find solutions, leadership tips, and governance knowledge about board-related issues.
Twenty-five National Health Council member organizations have enrolled their board members and key staff at the national and chapter levels using the NHC program. To learn more about this program, you can contact Kelly Clapp at kclapp@nhcouncil.org. If you have specific questions about BoardSource, please visit the BoardSource website at http://www.boardsource.org.
International Alliance of Patients’ Organizations
NHC President Myrl Weinberg completed her term as chair of the International Alliance of Patients’ Organizations (IAPO) on August 1. She now begins her term as immediate past chair.
IAPO is a unique global alliance representing patients of all nationalities across all disease areas and promoting patient-centered health care around the world. The NHC was honored to host IAPO’s Chief Executive Officer, Joanna Groves, for a day during her business trip to Washington, DC, in early August.
One of IAPO’s initiatives is ensuring accurate, relevant, and comprehensive information is provided to enable patients to make informed decisions about health care treatments and living with their condition. This summer, IAPO created a Policy Statement on Patient Information that addresses the importance of presenting patient information in an appropriate format according to health literacy principles that consider the individual’s condition, language, age, understanding, abilities, and culture. NHC staff was asked to review and supply comments on the draft policy.
IAPO is also developing a practical guide to health literacy. The guide will provide background information and a series of case studies that exemplify a range of approaches and models, including written communications, to address health literacy issues.
Finally, IAPO will be holding a series of meetings October 10-15 in Buenos Aires, Argentina. The 4th Global Patients Congress will be held February 23-25, 2010, in Istanbul, Turkey, and will focus on the value of patient engagement.
The Center for Information and Study on Clinical Research Participation (CISCRP)
NHC President Myrl Weinberg serves on the Board of Advisors for the Center for Information and Study on Clinical Research Participation (CISCRP). Below are highlights of key initiatives that are helping to move this nonprofit organization forward.
- CISCRP recently launched the Medical Heroes newsletter for the public and patients and is re-launching The Participant, a newsletter dedicated to clinical research and health care professionals. In conjunction with the Medical Heroes public service announcements being showcased, CISCRP has developed thank-you packets for research sites to give to their participants. These packets are designed to provide much needed follow-up information to those who have participated in a clinical study.
- CISCRP has expanded its online service to include free custom searches for patients requiring additional assistance. The public can call or email CISCRP, and the organization will conduct a search for clinical trials in their area based on the information the patients provide.
- In the past year, CISCPR has run focus groups to determine what motivates people to participate in a clinical trial. A white paper that discusses the focus group findings will be produced soon. The organization has also begun working with pharmaceutical companies to translate clinical trial results so that the public can understand what exactly occurred during the trial and the outcome of the trial.
- Finally, CISCRP recently debuted the AWARE for All Clinical Research Education Day in Baltimore, Maryland, and will be debuting it in Raleigh-Durham, North Carolina, on September 12.
Presentations by NHC Staff
- NHC President Myrl Weinberg spoke at the National Youth Leadership Forum on Medicine at Georgetown University on July 1.
- NHC Executive Vice President and Chief Operating Officer Marc Boutin was a panelist at the National Pharmaceutical Council Symposium on CER on June 17, the National Pharmaceutical Council Hill briefing on CER on July 9, and the 2009 RAND Conference Prescription for Healthier Patients: Real Solutions for Better Medication Adherence on delivery system reform on July 15.
