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American People
 

June 2011 council Currents

Strategic Initiatives

Extending Our Reach

 

New Online Resource Center Promotes Good Governance

The economic downturn and increasing scrutiny from lawmakers have emphasized how important it is for nonprofit organizations to meet the highest levels of accountability. The National Health Council's Standards of Excellence Certification® Program is widely recognized as the gold standard for transparency and good public stewardship among patient advocacy organizations.

 

To complement the standards, the NHC has also worked with Independent Sector in the development of the Principles for Good Governance and Ethical Practice, which have broad application throughout the entire nonprofit sector. To promulgate the Principles, Independent Sector recently launched a new online Resource Center on Good Governance and Ethical Practice. Visit the resource center to explore more than 250 tools, model policies, and other resources related to legal compliance and public disclosure, effective governance, financial oversight, and responsible fundraising.

 

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NHC Voice before Congress and Policy Makers

 

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Sharing the NHC Message and Knowledge with Others

  • On February 23, NHC Assistant Vice President of Communications and Marketing Nancy Hughes presented at the Brookings Institution meeting on the Patient Medication Information Project.
  • On March 14, NHC Executive Vice President and Chief Operating Officer Marc Boutin presented at the PKD Foundation Legislative Conference.
  • On March 15, NHC President Myrl Weinberg participated on a Drug Information Association Panel on developing disease-specific data standards.
  • On March 16, Boutin presented at the Council for American Medical Innovation (CAMI) Partner Meeting on the MODDERN Cures Solution.
  • On April 4 and 5, Boutin presented on the MODDERN Cures Solution at the Cambridge Healthtech Institute's Conference on Encouraging Developments for Therapeutics for Neglected Diseases.
  • On April 7, Weinberg presented at the Atlantic Health Care Forum on a panel titled Behavioral Economics: The Role of Patients and Caregivers in Health Care.
  • On April 13, Boutin presented on comparative effectiveness research at an Agency of Healthcare Research and Quality stakeholder meeting roundtable discussion.
  • On April 14, Boutin spoke at the Pharmaceutical Researchers and Manufacturers Association (PhRMA) Annual Meeting.
  • On April 28, Boutin presented at an AdvaMed lunch briefing on the patient perspective on accountable care organizations.
  • On May 4, Weinberg took part in a panel discussion on chronic non-communicable diseases at the PhRMA International Section Annual Meeting.
  • On May 11, Boutin participated on a panel examining the impact of the changing health insurance marketplace and its impact on patients at the National Patient Advocate Foundation Policy Consortium.
  • On May 21, Weinberg presented succession planning at NHC member Sjogren's Syndrome Foundation's Board meeting.
  • On May 25, Boutin moderated a panel on quality patient care in a budget deficit economy at a PhRMA conference.
  • On June 1, Weinberg took part in the Brookings Institute Active Surveillance Implementation Council meeting.

 

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New NHC Members

Since March 2011, the National Health Council (NHC) has approved the applications for four new members.

 

The NHC welcomes the ABMRF/The Foundation for Alcohol Research into the nonprofits with an interest in health category. Astellas Pharma and Purdue Pharma were accepted into the business and industry category. Finally, the Medical Device Manufacturers Association was accepted into the professional and membership association category.

 

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Center for Information and Study on Clinical Research Participation (CISCRP)

The Center for Information and Study on Clinical Research Participation (CISCRP) continues to organize and host the AWARE for All Program, A Clinical Research Day. The purpose of AWARE For All is to address the general public's lack of fundamental knowledge about clinical research and to build greater awareness of the essential role research volunteers play in advancing medical science. If you have any questions regarding the Aware for All program, e-mail aware@ciscrp.org or call 617-725-2750.

 

The National Health Council is a proud supporter of CISCRP, and NHC President Myrl Weinberg is a member of the CISCRP Board of Advisors.

 

Click here to get more information about CISCRP and read their latest Newsletter.

 

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International Alliance of Patients’ Organizations (IAPO)

The International Alliance of Patients’ Organizations (IAPO) is a unique global alliance representing patients of all nationalities across all disease areas, and the NHC was instrumental in its creation and operations.

 

From April 27-29, IAPO participated in the World Health Organization (WHO) Global Forum and Ministerial Conference on Non-communicable Diseases (NCDs) that was held in Moscow. The WHO Forum was designed to bring together a wide group of stakeholders to share views and experiences on the challenges and opportunities available to patient groups in the area of non-communicable disease prevention, treatment, and control.

 

Participants identified and committed to priority actions to strengthen global action in prevention and control of NCDs. Various IAPO members were active in the Global Forum. In addition, several National Health Council Board Members Participated in the forum; John Seffrin, chief executive officer of the American Cancer Society and Larry Hausner, chief executive officer of the American Diabetes Association; Both CEOs participated as members of the U.S. delegation. The remainder of the delegation was composed of officials from the Department of Health and Human Services, Centers for Disease Control and Prevention, National Institutes of Health, US Agency for International Development, and the State Department.

 

Joanna Groves, IAPO's chief executive officer, spoke at the conference about the unique perspective of patient organizations when tackling issues related to NCDs. In her presentation she shared practical examples of how patient advocates are contributing knowledge, experience, and resources to support efforts to tackle chronic disease in addition to developing appropriate policies and services that empower patients. A key outcome of the conference was the Moscow Declaration.

 

On May 16, IAPO and two of its member patient groups - Alzheimer's Disease International and the Multiple Sclerosis International Federation - hosted a side meeting at the 64th World Health Assembly on the Role of Patients in the Prevention and Management of Non-communicable Diseases. The meeting was held in Geneva, Switzerland, and attended by more than 50 participants, including WHO member state representatives, health professionals, and WHO representatives.

 

The meeting highlighted the role that patients and patient organizations play in the prevention and management of non-communicable diseases. At the meeting patient advocates called for a stronger role in setting the WHO agenda in the design and delivery of strategies to prevent and manage NCDs.

 

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