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Shared Patient Information

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Welcome

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Our Shared Patient Information (SPI) pilot program: We conducted our pilot Shared Patient Information program, previously known as our Real World Data program, in the years from 2016 to 2020. During that time we launched patient conditions surveys on Migraine and Lupus and we shared the results of the surveys on the approximately 50 pages of Shared Patient Information reports which you can click into below. In all over 13,000 people took the surveys and over 500,000 people have viewed the data. We concluded the pilot in 2020 and collected patient outcomes, a summary of which can be seen in “What are Members are Saying” below.

PLEASE NOTE: The data in the links below was collected from 2016 to 2020 and as a result some of it may now be out of date.

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Get the Whole Picture

These are significant problems, and that’s what HHP’s Shared Patient Information program is about. We provide independent, unbiased information from our community, including all types of medicines, to help you make informed healthcare decisions. 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Share & Learn

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Migraines are a headache disorder characterized by recurrent headaches that range from moderate to severe.

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Lupus is an autoimmune disease that occurs when the immune system attacks tissues and organs.

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What Our Members Are Saying

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In 2016, HHP launched the first Shared Patient Information survey on migraine headaches. Since then, over 13,000 survey respondents have contributed to HHP’s Migraine Headache Survey, and the survey results and graphical reports have had almost 400,000 pageviews. The most recent feedback has been outstanding, with over 80% of survey respondents reporting the data was easy to navigate and well organized. More than 70% reported that they would recommend the data to friends or family who are experiencing migraines. More than half of migraine survey respondents said they would use the migraine data to help themselves or someone they care for.

Most notably, after viewing the migraine survey data, respondents who reported their understanding of migraine headaches as excellent, very good, or good increased by almost 20%. An increase of over 23% was observed in respondents who reported their understanding of migraine treatments as excellent, very good, or good. Lastly, respondents who reported their understanding of migraine causes and triggers as excellent, very good, or good increased by 14%.

In 2017, HHP introduced the HHP Lupus Survey. To date, our lupus data has had over 25,000 pageviews, and continues to grow. We are extremely grateful to all our members who contributed to the Migraine and Lupus Surveys to provide useful information to others and help make the Shared Patient Information program a continued success.

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Become Our Partner

[/fusion_title][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”” rule_size=”” rule_color=”” hue=”” saturation=”” lightness=”” alpha=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”justify” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”” margin_right=”” margin_bottom=”” margin_left=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” font_size=”” line_height=”” letter_spacing=”” text_transform=”” text_color=”” animation_type=”” animation_direction=”left” animation_color=”” animation_speed=”0.3″ animation_delay=”0″ animation_offset=””]As part of HHP’s philosophy of collaboration, we are committed to partnering with local community health groups and associations to support quality improvements in healthcare, better population health and lower costs for all stakeholders. At HHP, we are excited to work with partners in this new program by promoting the sharing of best practices and allowing the dissemination of information and data worldwide.

HHP works in partnership to deliver the Shared Patient Information program individually or integrated with the other elements of HHP IMPACT, such as Patient Advocacy and Learning Academy. 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title=”” target=”_self” link_attributes=”” alignment_medium=”” alignment_small=”” alignment=”center” modal=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”hhp-cta-btn-2″ id=”buttonShadow” color=”default” button_gradient_top_color_hover=”” hue=”” saturation=”” lightness=”” alpha=”” button_gradient_top_color=”” button_gradient_bottom_color_hover=”” button_gradient_bottom_color=”” gradient_start_position=”” gradient_end_position=”” gradient_type=”” radial_direction=”” linear_angle=”” accent_hover_color=”” accent_color=”” type=”” bevel_color=”” bevel_color_hover=”” border_top=”” border_right=”” border_bottom=”” border_left=”” border_radius_top_left=”” border_radius_top_right=”” border_radius_bottom_right=”” border_radius_bottom_left=”” border_hover_color=”” border_color=”” size=”xlarge” padding_top=”” padding_right=”” padding_bottom=”” padding_left=”” fusion_font_family_button_font=”” fusion_font_variant_button_font=”” 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Crowdsourced

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SPI is derived from a broad range of individuals’ experiences in the real world, including patients often excluded from clinical trials.

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Real-time updates

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SPI can provide information to patients sooner than clinical trial data. HHP’s Shared Patient Information is displayed in real-time.

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Comparable outcomes

SPI enables patients to compare outcomes between a broader range of treatments.

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Actionable insights

SPI complements clinical trial research and transforms it into actionable insights by adding greater value and impact.

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Bridging the gap

SPI bridges the gap between clinical trial research and patient outcomes in real-world settings.

225

Countries Worldwide

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50+

Migraine Reports

13,000

Survey Respondent

1M

Site Visitor

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60

Migraine Treatment Ratings

Our Future Plans

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HEALTH CONDITIONS

Expansion of the SPI program to include more conditions & regions

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PARTNERSHIP

Increasing our collaborative partnerships with other local and international NGOs

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MOBILE APP

Developing the SPI program to include mobile access

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Learn More About Our Other Services

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Patient Advocacy

HHP provides access to a supportive peer-to-peer community.

[/fusion_text][fusion_button link=”https://dev.humanhealthproject.org/hhp-pa/” title=”” target=”_self” link_attributes=”” alignment_medium=”” alignment_small=”” alignment=”center” modal=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”hhp-cta-btn-2″ id=”buttonShadow” color=”default” button_gradient_top_color_hover=”” hue=”” saturation=”” lightness=”” alpha=”” button_gradient_top_color=”” button_gradient_bottom_color_hover=”” button_gradient_bottom_color=”” gradient_start_position=”” gradient_end_position=”” gradient_type=”” radial_direction=”” linear_angle=”180″ accent_hover_color=”” accent_color=”” type=”” bevel_color=”” bevel_color_hover=”” border_top=”” border_right=”” border_bottom=”” border_left=”” border_radius_top_left=”” border_radius_top_right=”” border_radius_bottom_right=”” border_radius_bottom_left=”” border_hover_color=”” border_color=”” size=”” padding_top=”” padding_right=”” padding_bottom=”” padding_left=”” 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caption_margin_bottom=”” caption_margin_left=”” animation_type=”” animation_direction=”left” animation_color=”” animation_speed=”0.3″ animation_delay=”0″ animation_offset=”” filter_hue=”0″ filter_saturation=”100″ filter_brightness=”100″ filter_contrast=”100″ filter_invert=”0″ filter_sepia=”0″ filter_opacity=”100″ filter_blur=”0″ filter_hue_hover=”0″ filter_saturation_hover=”100″ filter_brightness_hover=”100″ filter_contrast_hover=”100″ filter_invert_hover=”0″ filter_sepia_hover=”0″ filter_opacity_hover=”100″ filter_blur_hover=”0″]https://humanhealthproject.org/wp-content/uploads/2023/09/patient-education_2-1.webp[/fusion_imageframe][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”” rule_size=”” rule_color=”” hue=”” saturation=”” lightness=”” alpha=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”” id=”” margin_top=”” 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Patient Education

We help patients through education and peer-to-peer information.

[/fusion_text][fusion_button link=”https://dev.humanhealthproject.org/patient-education-v1-7/” title=”” target=”_self” link_attributes=”” alignment_medium=”” alignment_small=”” alignment=”center” modal=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”hhp-cta-btn-2″ id=”buttonShadow” color=”default” button_gradient_top_color_hover=”” hue=”” saturation=”” lightness=”” alpha=”” button_gradient_top_color=”” button_gradient_bottom_color_hover=”” button_gradient_bottom_color=”” gradient_start_position=”” gradient_end_position=”” gradient_type=”” radial_direction=”” linear_angle=”180″ accent_hover_color=”” accent_color=”” type=”” bevel_color=”” bevel_color_hover=”” border_top=”” border_right=”” border_bottom=”” border_left=”” border_radius_top_left=”” border_radius_top_right=”” border_radius_bottom_right=”” border_radius_bottom_left=”” border_hover_color=”” border_color=”” size=”” padding_top=”” padding_right=”” padding_bottom=”” padding_left=”” fusion_font_family_button_font=”” fusion_font_variant_button_font=”” font_size=”” line_height=”” letter_spacing=”” text_transform=”” stretch=”default” margin_top=”” margin_right=”” margin_bottom=”” margin_left=”” icon=”” icon_position=”left” icon_divider=”no” hover_transition=”none” animation_type=”” animation_direction=”left” animation_color=”” animation_speed=”0.3″ animation_delay=”0″ animation_offset=””]LEARN MORE[/fusion_button][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container][fusion_builder_container hundred_percent=”no” hundred_percent_height=”no” hundred_percent_height_scroll=”no” hundred_percent_height_center_content=”yes” equal_height_columns=”no” menu_anchor=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” status=”published” publish_date=”” class=”” id=”” background_color=”” background_image=”” background_position=”center center” background_repeat=”no-repeat” fade=”no” background_parallax=”none” enable_mobile=”no” parallax_speed=”0.3″ video_mp4=”” video_webm=”” video_ogv=”” video_url=”” video_aspect_ratio=”16:9″ video_loop=”yes” video_mute=”yes” video_preview_image=”” border_color=”” border_style=”solid” margin_top=”0px” margin_bottom=”0px” padding_top=”3%” padding_right=”15%” padding_bottom=”0px” padding_left=”15%” admin_toggled=”no” type=”flex”][fusion_builder_row][fusion_builder_column type=”1_1″ layout=”1_1″ spacing=”” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_image_id=”” background_position=”left top” background_repeat=”no-repeat” hover_type=”none” border_color=”” border_style=”solid” border_position=”all” box_shadow=”no” box_shadow_blur=”0″ box_shadow_spread=”0″ box_shadow_color=”” box_shadow_style=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” first=”true” last=”true” padding_bottom=”0px” margin_bottom=”0px” border_sizes_top=”0″ border_sizes_bottom=”0″ border_sizes_left=”0″ border_sizes_right=”0″][fusion_text columns=”” column_min_width=”” column_spacing=”” rule_style=”default” rule_size=”” rule_color=”” content_alignment_medium=”” content_alignment_small=”” content_alignment=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sticky_display=”normal,sticky” class=”joinForm” id=”” font_size=”” fusion_font_family_text_font=”” fusion_font_variant_text_font=”” line_height=”” letter_spacing=”” text_color=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]

Our project is growing and we want you to be a part of it.
More People. More Information. Better Health.

[fusion_button link=”https://humanhealthproject.org/register/free-membership/” text_transform=”” title=”” target=”_self” link_attributes=”” alignment=”” modal=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”buttonForm” id=”” color=”custom” button_gradient_top_color=”#065399″ button_gradient_bottom_color=”#065399″ button_gradient_top_color_hover=”#ffffff” button_gradient_bottom_color_hover=”#ffffff” accent_color=”” accent_hover_color=”#065399″ type=”flat” bevel_color=”” border_width=”” border_radius=”4″ border_color=”” border_hover_color=”” size=”” stretch=”default” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Join Us![/fusion_button]

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