Plans for this year and beyond

From PWN founders Dr. Lewis Blevins and Jorge D. Faccinetti – Like all organizations, from time to time, we undertake planning and look to the future to create new innovative ways to get our message to the world. Planning fulfills three important roles: one is to, obviously, lay out future initiatives, the second is to look backward to learn from past programs and see where we can improve outcomes, and the third is to understand if the actions taken are on strategy and are accomplishing what we set out to accomplish. A well-rounded planning exercise will leave the organization with a clear set of goals for the future and a keen understanding of the organization’s strengths, weaknesses, opportunities, and threats. In strategic planning parlance, this is known as “SWOT” analysis. For PWN this year’s planning yielded new initiatives that we wanted to share with you. For the most part, these initiatives are designed to continue to get useful information to patients that improve their knowledge of their disease and empowers them to work more effectively with their physicians; to provide tools so patients and patient outreach groups can be more effective advocates for their conditions; and to expand the reach so awareness of pituitary disease leads to earlier diagnosis. Our rationale for early diagnosis is simple: awareness leads to interest, which leads to engagement, which leads to informed people. And a higher number of informed people and health care professionals undoubtedly lead to much lower numbers of misdiagnosed and undiagnosed people. So with that in mind here are our initiatives designed to educate and inform the public, people affected by a pituitary disease and health professionals.

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Downloadable Brochures: listing specific podcasts and articles available for download from PWN website. These brochures are distributed to physicians, physicians’ assistants, ophthalmologists, pharmacists and other key healthcare professionals. The objective is to provide educational materials that physicians can give to their patients to educate them about their conditions.

Content development: Continued development of original articles by Dr. Lewis Blevins, J D Faccinetti and other experts and thought leaders, videos and podcasts about issues related to rare pituitary disorders. Content is made available through the website for patients, patient advocates, physicians and other key healthcare professionals.

The Pituitary World News round-table discussion series: This is a video series formatted similarly to the critically acclaimed Charlie Rose show on PBS with experts and people touched by pituitary disease. We plan to develop and produce 4 to 6 episodes focusing on the myriad of issues that affect the diagnosis and treatment of pituitary disease from the patient’s point of view, physicians and other healthcare provider groups.

The patient advocate series: These are content contributions from patient groups leaders, advocates and other participants that provide information and support to patients and their families. The objective is to make this information widely available so new patient groups can be more effective in the work they do to support their communities.

Webcasting: PWN is planning to facilitate the broadcasting of critical content from pituitary conferences around the world. These conferences are typically done at pituitary centers of excellence and other key organizations, including patient advocate organizations, patient groups, and other professional sources. This program will make content available from these conferences to a large number of people worldwide, streamed through the PWN website and later made available to download from the site. PWN cofounders Dr. Lewis Blevins and J D Faccinetti will edit and moderate selected presentations.

Mental and emotional health Issues in people with pituitary disease: PWN is planning to continue to develop content for the section of the website dedicated to emotional and mental health. The key objective is to increase awareness of the connection between pituitary disease and mental health, specifically to learn how the delays in getting properly diagnosed, then treated, causes so many more problems in life. How are the pituitary and adrenal glands involved in mental health? What is the relationship between stress and/or psychological or physical trauma and pituitary disorders? How can increasing awareness by mental health providers possibly help patients and their families? What are the mental health symptoms that commonly accompany pituitary disorders? What is the impact on families and support groups? How do we find mental health professionals that can be helpful to pituitary patients?

Advocacy corner: PWN is developing materials to help patient groups and communities become more effective in reaching more people suffering from a pituitary disease. These programs will provide initiatives and ideas that group leaders can use to make the job of communication and advocacy more effective and easier. These are “How To” guides designed to increase awareness of pituitary disease to help diagnose more people early.

Insight and conversations: “Conversations” is a PWN program that formally elicits opinion and insight from the vast community of pituitary patients. The objective of the program “Your Opinion Counts” is to serve up a platform for patients and their families to communicate their issues directly. The information is used to develop effective educational and informational programs to improve the knowledge and QOL of pituitary patients. PWN has been active in eliciting feedback from patients, their families, physicians and other healthcare providers through surveys, polls and one-question platforms.

Translation of content: PWN’s website and social media channels get a considerable amount of clicks from non-English speaking countries. However, we believe we can dramatically reach more people around the world if we can reach those people in their native languages, particularly the patient outreach and Dr. Blevins’ medical posts and commentary. We plan to provide content in languages, including Spanish, French, Chinese, Italian, German, Dutch, Portuguese, Arabic, Russian and others.

PR and new audience reach: PWN plans to execute an aggressive public relations campaign designed to explain and promote its content and mission. The principal objective is to increase the reach of the publication beyond the diagnosed public. This is a critical piece in PWN’s effort to improve the rate of undiagnosed or misdiagnosed people.

Public Policy Initiatives: Last year PWN participated in an effort to foster better-informed policy makers and increase the knowledge of members of the US Congress about acromegaly by facilitating ways in which patients could approach their representatives. Our objective is to lead this year’s effort with policy makers to bring forward the special needs of the pituitary disease community, specifically the need to continue research and facilitate the development of new drugs and treatment of these diseases. We hope to implement several other public policy initiatives critical to pituitary patients’ quality of life issues, namely:
• Continuing to encourage a dialogue between patients and policy makers by strategically motivating patients to communicate the unmet needs in critically important quality of life issues to pituitary patients such as mental health, nutrition, bone/joint health and Arthritis
• Navigating the changes to the ACA and provide information for smart decision-making.
• Piggyback with on-going public policy efforts such as The National Pain Strategy, Let’s Move (physical activity initiative) and the National Arthritis Action Plan.

Speakers Bureau: Expert speakers and patients will be part of this group of thought leaders that will be made available for speaking engagements. One key program will be the deployment of patients that can make presentations to medical schools to enhance pituitary disease curriculums. Please see the UCSF/UC Berkeley joint medical school program acromegaly series for more details.

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