As a member of the Pulmonary Hypertension Association (PHA) Board of Trustees and Chair of the new Strategic Planning Committee, I am proud to present the results from our first comprehensive community-wide survey. Until this survey, PHA had never formally gone to the pulmonary hypertension (PH) community to learn whether, and to what degree, our programs are having an impact on advancing support, education, research and patient care. The survey was the first part of a process to develop an organizational strategic plan to put PHA on its post-25th anniversary year course.

I am honored to be a part of such an important process that will directly impact my wife, who is living with PH, as well as so many other patients, families and professional caregivers — including those who make up PHA’s pediatric community.

PHA distributed the survey to approximately 13,000 individuals representing our various interconnected constituencies — patients and caregivers; health care professionals; and our pediatric family and caregiver community. The results highlight our community’s priority key focus areas (KFAs), which will drive PHA’s strategic planning process and implementation.

PHA’s mission is to extend and improve the lives of those affected by PH. Its vision is a world without PH, empowered by hope. Our analysis of the survey data reveals that the values of the entire community and of PHA’s leadership are consistent and reflective of both our mission and vision.  The survey provided detailed insights into focus areas that each stakeholder values. Stakeholders also shared their impressions of PHA’s effectiveness in delivering programs that support each focus area category.

Four KFAs: advocate for the PH community, catalyze research for a cure, empower patients and caregivers; and promote quality patient care – are priorities shared by all PHA stakeholders. Like members of the interrelated communities we serve, PHA’s Board, staff and medical leadership view these KFAs as top priorities.

Beyond amplifying and clarifying our community’s priorities, the survey reinforced the unique connectedness of our community and our shared values. Programs identified under each KFA strengthen and/or rely on the success of all initiatives PHA’s stakeholders have helped us prioritize.

The bars on the above table represent the average ranking based on responses to the overall community’s views of the importance of six PHA KFAs.

To ensure that we direct our human and financial resources to support the initiatives important to our community, we asked you to rank specific program areas from 1 to 6, with 6 representing the highest value – in terms of significance to you and PHA’s effectiveness in each category.

Outlined below are the community’s top priority KFAs in alphabetical order. Listed under each focus area are some specific examples of PHA initiatives, which you responded to in terms of importance to you and your perception of PHA’s performance in delivering against them.

Advocate for the PH Community

  • Raise awareness of all forms of PH, their symptoms, the importance of early diagnosis, and treatment options
  • Influence Congress and healthcare regulators on behalf of the PH community
  • Establish appropriate relationships with other organizations that can advance developments in PH community objectives
  • Communicate with the PH community about new developments in PH and at PHA

Catalyze Research for a Cure

  • Support the next generation of PH physician researchers through fellowships and young investigator awards
  • Provide grants for innovative, but difficult-to-fund research projects
  • Communicate with, interact and advise where appropriate, researchers and research institutions focusing on PH causes, treatments and cure-related initiatives

Patient and Caregiver Empowerment

  • Hold international conferences/symposia that offer networking opportunities, medical education, care management education and lifestyle information
  • Hold local and regional meetings that offer networking opportunities, medical education, care management education and lifestyle information
  • Enhance local patient support groups by expanding into new locales and targeting underserved or different populations (e.g. associated diseases, gender & ages, time since diagnosis)
  • Provide printed educational and informational resources and distribute to appropriate physician, PHCC, and clinical situations
  • Offer online educational and informational resources
  • Provide Spanish language resources

Promote Quality Patient Care

  • Maintain and promote a financially self‐sustaining nationwide network of accredited pulmonary hypertension care centers
  • Introduce a protected patient clinical data research registry supported by a sustainable business model
  • Hold national conferences/symposia that offer patient and medical provider networking opportunities, CME/CPE medical education, care management education, and lifestyle information
  • Hold local and regional meetings (such as PHA on the Road) that offer patient and/or medical provider networking opportunities, CME/CPE medical education, care management education, and lifestyle information

Armed with the survey data, the Strategic Planning Committee drafted the organization’s new operational strategic plan, which the Board approved and implemented. PHA will hold itself accountable for pursuing innovative programs and approaches that strengthen our ability to deliver results that meet the evolving priorities of our diverse PH community — individually and collectively.

Special thanks to my fellow Strategic Planning Committee members: Erika Berman-Rosenzweig, MD, Colleen Connor, Stacey Gausling, Michael McGoon MD, and Melisa Wilson, ARNP, ACNP-BC, as well as PHA President and CEO Brad A. Wong, who will lead efforts to ensure that staff efforts align with the strategic plan.

If you have questions about the survey or any of the KFA initiatives we’re working on, please let us know. Brad would like to hear from you directly at gro.noitaicossAHP@AHPgnoWdarB. 

Mitchell Koppelman, PhD

Strategic Planning Committee Chair