Collaborating with Patients to Design SDoH Integration

PAC group photo

Patient Leadership – involving patients as co-designers of improved primary care – is a component of equity-oriented care. It ensures that time, energy, and resources will be directed toward interventions that effectively improve health and wellbeing. As primary care organizations integrate Social Determinants of Health (SDoH) strategies and interventions, it is essential that caregivers and community members with lived experience navigating inequities have an influential voice at the table. In this brief, we discuss the impact of patients’ involvement in the design of primary care-based SDoH work, as well as key recommendations and accompanying tools to effectively co-design healthcare improvement with patients.

Background

In May of 2018, 21 primary care teams joined forces with Health Leads in an 18-month learning collaborative focused on improving capacity to address patients’ essential resource needs. The curriculum for the Collaborative to Advance Social Health Integration (CASHI) presented patient leadership as a key driver of improvement. 

In our experience, patient leadership has not been commonplace in social health programs.  For example, at the start of CASHI in May 2018, only 5% of the 21 participating teams had structures in place to incorporate patient leadership into their social health programs.  Through the collaborative, we sought to examine how methods for gathering and using patient feedback could be applied in the integration of social need interventions in the primary care setting and the impact on quality.  By the end of the collaborative, in October 2019, over 70% of teams were incorporating patient input in their social need programs. Patients provided input into everything from social need screening practices to improving measurement, program design, and community partnerships.  Patient leadership was also built into the collaborative structure itself, with each CASHI workshop on patient leadership co-led by a faculty member and one or more members of Health Leads’ Patient and Family Advisory Committee (PFAC). This paper outlines recommendations based on expertise in the field of consumer engagement as well as the experience and innovations from the CASHI community.

In this brief, when we talk about patient leaders as co-designers, we are talking about patients who are advocates or ambassadors representing others (e.g. on advisory councils or QI teams). A patient leader uses their health and social service journey to educate and empower others. Patient leaders are often storytellers, but they can also help gather or interpret data needed to understand a wider patient perspective and experience. Patient leaders also create new materials, identify new interventions and opportunities to improve processes. CASHI emphasized patient leadership to ensure primary care sites design and improve their SDoH programs with patients instead of for patients.

While the examples presented throughout focus on the value of patient leadership in social health integration efforts, our findings and recommendations from this work in CASHI align with known characteristics of successful patient involvement in program design, including bi-directional trust between patients and the organization, inclusion of diverse community perspectives, buy-in for patient leadership at multiple levels and valuing feedback.   

CASHI teams used a variety of methods to engage patients in informing and improving their SDoH programs such as establishing or including existing Patient and Family Advisory Councils (PFAC). Teams also conducted surveys, focus groups, and some included patients directly in their quality improvement efforts. Specific strategies and their influence on their SDoH programs are described below (Figure 1).

Figure 1: Examples of CASHI Approaches to Patient Leadership and their Impacts on Social Health Integration

Recommendations

1. Ensure that the organization is receptive to patient feedback: Organizations must create a work environment that is receptive and emphatic towards patient participation. Communicate the mission of your PFAC and the benefits of patient engagement multiple times in multiple ways to all levels of the organization. Share success stories of how patient involvement in co-design has shaped improvements, new interventions, and positive outcomes in your newsletter and annual report. Advocate for funding to support the development of long-term structures like PFACs, and to make participation accessible to all marginalized patients.

For example, Virginia Commonwealth University Health (VCU Health) uses multiple approaches to support organizational level buy-in for patient feedback and incorporate it into daily activities.

  • New patient onboarding stresses the need for two-way communication, mutual goal setting and patient team partnership.
  • The Medical Director models desired behavior by asking patients for feedback daily and sets this expectation with the team.
  • Feedback on unmet needs and community concerns is routinely solicited from patients and incorporated into operations.
  • Discussion of patients’ feedback and concerns are incorporated into daily team huddles.

At VCU Health, the culture is shifting internally where staff and leaders commonly ask each other:  “Have you asked a patient about that?” “Have you consulted our PFAC about that?” “Could patients be involved in co-designing that?”

2. Take action to include a diversity of perspectives: When building PFACs, or convening a focus group, recruit patients and families who have experience navigating barriers to the essential resources they need to be healthy. This may mean diversifying an existing board, and/or building a specific advisory committee for SDoH work. Intentional recruitment takes time, resources, and a sincere commitment to honor the social and intellectual capital that members bring to the table and is well worth it!

Example strategies:

  •  Ask existing PFAC members and Community Health workers for recommendations of local community organizers or community health advocates- e.g. fair housing advocates, disability rights advocates, health insurance navigators, or food justice organizers.
  •  Post fliers or interest cards in your clinic; ask patients to share fliers and interest cards
  •  Host focus groups or member meetings focused on SDoH programming, and recruit from these groups.
  •  Work with front desk or nursing staff who may be familiar with patients experiencing insurance and transportation barriers

3. Advocate for equitable compensation of patient leaders: When building patient leadership structures, compensation is an essential component. Patient leaders provide invaluable contributions and should be reimbursed  for their time and effort. By establishing guidelines early on in the process, you can ensure everyone is fairly compensated.

4. Go beyond feedback for validation: create the conditions for meaningful collaboration : The importance of co-designing SDoH programs with patients cannot be overstated, however it is important to prepare as discussions around sensitive issues and stigma can be uncomfortable for both patients and care team members. And, this type of collaboration requires building bi-directional trust, which takes time to establish.

Support patients to effectively participate and share their stories 

Most members of an improvement team, or participants in an improvement project, can benefit from an orientation to the tools and process being used. In particular, it is valuable to invest in orienting and training patient leaders to support them to share information in a way that will provide deeper insights behind the quality improvement data being discussed. For example:

  • Truman Medical Center (TMC) offers a storytelling workshop to support patient leaders to develop skills like how to direct a story to different audiences, which elements to include, and self-care when sharing emotionally sensitive experiences.
  • Virginia Commonwealth University Health’s (VCU) Complex Care Clinic PFAC typically selects one focus area to explore for every 6 months. For example, the group might spend 6 months focusing improvement on SDoH screening processes, tools, and measurement. This creates continuity and immersion in the language and concepts around a particular set of improvements

As patients are being recruited for a PFAC, it is important that before the work begins, the organization clearly communicates roles, responsibilities, and time commitments to patient participants, and periodically checks that the work is meaningful and valuable for the patients involved. Taking steps to communicate these details early, sets the precedent that patients’ time and contributions are valued by the organization and that these efforts are intended to be of value to both the organization and the patients themselves. 

Additional considerations for creating the conditions for open and honest collaboration include:

  • During meetings, normalize asking questions.
  • Limit the use of acronyms.
  • Provide references for tools and methods, as well as jargon glossaries.
  • Mitigate power dynamics.
  • Choose skilled facilitators, and facilitators with shared lived experience.

Finally, consider how to communicate how patient feedback was incorporated and used. This acknowledges to patients that their voices were heard and communicates to leadership the valuable contributions of these partnerships. For example, Oregon Health and Science University’s Primary Care Clinic at Richmond created a flier to communicate the purpose and work of their PFAC and included details on how feedback from PFAC members guided the evolution of their social determinants screener.

5. Use multiple strategies to support ongoing dialogue to foster trust between patients and care teams: Short-term engagements like surveys and focus groups should be used in addition to, and to reinforce longer-term engagements, like PFACs, to improve sustainability. Focus groups can provide more context and data for a project and are also an excellent source for new PFAC members. PFAC members, with adequate resources and support, can conduct surveys and interviews, and recruit other patient leaders. They can also potentially go on to join the board of directors. This pipeline of engagement opportunities is displayed in Community Catalyst’s “Ladder of Engagement” (Figure 2). 

Figure 2: Community Catalyst’s “Ladder of Engagement” 

For example, Truman Medical Center (TMC) has two formal long-term Patient Leadership models: a PFAC and Patient Champions, who participate on department or subject specific committees. TMC’s PFAC meets bi-monthly and patients participate for two years of service. The council addresses initiatives throughout the hospital, including those focused on SDoH.

Before launching their SDoH screening initiative, TMC interviewed 100 patients about which priority community needs to screen for. These interviews clarified three top areas: transportation, food, and affordable medications.

When Truman’s PFAC reviewed the new screening tool, they urged the hospital to clarify for patients why the SDoH screens were being administered and where the information would be stored. The PFAC originally proposed a poster campaign, but then instead created and added explanatory language to the screen itself: TMC SDOH Screening Form.

TMC’s PFAC also advises their strategy for gathering more patient feedback. The PFAC suggested that Truman create a landing page on their website for all things patient feedback. TMC Cares: The Patient Voice is now a portal through which patients can proactively engage in giving feedback to TMC or apply to be a Patient Champion or PFAC member.

Before launching their social needs screening pilot, Children’s Minnesota partnered with two clinicians to invite families to participate in interviews at the end of their visit. The main goal was to inform the screening tool and program workflow. Once the basic components of the program were up and running, the team set up space in the clinic lobby to survey families on how the hospital could best grow and improve the program – including what needs are most important to families, what barriers they experience, and what they look for when accessing community resources.  Lastly, they organized a Listening Circle which provided the opportunity for a deeper dive into key questions on three topics: 1) community resources 2) program improvement and 3) program integration.   

Conclusion 

Investing in efforts to capture patient input and support patient leadership leads to the development of  SDoH interventions that are better aligned with the needs of patients and the community and are more likely to lead to improved outcomes and patient experience. Patient leaders use their health and social service journey to educate and empower others, most often on advisory councils or QI teams. It is crucial to build sustainable relationships and go beyond feedback and validation. By truly engaging with patient leaders as co-designers, this allows SDoH programs to be created with patients instead of for patients.  

Recommended Resources

The following resources are an accumulation of learnings and best practices our partners have shared throughout the years as they have incorporated patient leadership into social health programming. These tools are intended to provide first steps and considerations as you begin – or bolster – a Patient and Family Advisory Board at your organization. As always, these tools should be adapted to reflect your organization’s unique vision, values, and patient voice.

View Resources

These findings were made possible by support from The Commonwealth Fund.

Recent Resources

Args

post_type
0post
post_statuspublish
posts_per_page4
meta_query
relationAND
0Array ( )
cat
post__not_in
08647
orderby
dateASC
relevanssitrue

Module Settings

post_type_chooseoff|on|off|off|off|off|off|off|off|off|off
loop_stylecustom_loop_layout
shortcode_name[de_loop_template_shortcode]
loop_templatesdivi-blog
custom_loop_templatenone
loop_layout8931
filter_update_animationload-6
no_posts_layoutnone
no_posts_layout_textSorry, No posts.
is_main_loopoff
include_current_termsoff
groupping_post_objectoff
groupping_taxonomynone
show_empty_onloadoff
post_statuspublish
show_current_postoff
posts_number4
post_offset0
post_display_typerelated
saved_typewishlist
acf_linked_acfnone
related_contentcategories
related_acf_fieldnone
related_content_categoriespost_cats
is_category_loopoff
disable_sticky_postsoff
specific_post_objectsoff
related_content_tagsdefault
tax_name_relatednone
acf_name_relatednone
custom_tax_choosepost
acf_namenone
include_sticky_postson
include_sticky_posts_onlyoff
onload_tax_choosepost
sort_orderdate
acf_sort_fieldnone
acf_sort_typestring
acf_date_picker_fieldnone
acf_date_picker_methoddefault
acf_date_picker_custom_day30
order_asc_descASC
sec_acf_sort_fieldnone
sec_acf_sort_typestring
sec_acf_date_picker_fieldnone
sec_order_asc_descASC
enable_loadmoreoff
pagination_positionbottom
scrolltoon
scrollto_fine_tune0px
loadmore_textLoad More
loadmore_text_loadingLoading...
enable_resultcountoff
resultcount_positionright
result_count_single_textShowing the single result
result_count_all_textShowing all %d results
result_count_pagination_textShowing %d-%d of %d results
has_mapoff
map_all_postsoff
map_all_posts_limit-1
map_infoview_layoutnone
map_infoview_layout_ajaxoff
hide_marker_labeloff
map_clusteron
link_whole_girdoff
link_whole_gird_externaloff
external_acfnone
content_section_layoutnone
grid_layoutgrid
columns4
columns_tablet2
columns_mobile1
custom_gutter_widthoff
grid_list_defaultlist
grid_list_positionleft
grid_list_cookie_time30
grid_view_icon||divi||400
list_view_icon||fa||900
icon_padding7px|7px|7px|7px
icon_margin0px|10px|0px|0px
enable_overlayon
show_featured_imageon
show_read_moreoff
read_more_textRead More
show_authoron
show_dateon
date_formatF j, Y
show_categorieson
show_contentoff
excerpt_length270
excerpt_more...
show_commentsoff
meta_separator|
content_visibilityhover
image_hover_animationnone
loop_template_content_alignmentcenter_center
loop_template_color_themelight
loop_template_same_heighton
image_min_height150px
image_max_height500px
pagination_item_background#fff
pagination_item_background_active#ebe9eb
_builder_version4.21.0
_module_presetdefault
title_font_size14px
title_letter_spacing0px
title_line_height1em
excerpt_font_size14px
excerpt_letter_spacing0px
excerpt_line_height1em
loop_template_meta_font_size14px
loop_template_meta_letter_spacing0px
loop_template_meta_line_height1em
loop_template_meta_a_font_size14px
loop_template_meta_a_letter_spacing0px
loop_template_meta_a_line_height1em
loop_template_a_font_size14px
loop_template_a_letter_spacing0px
loop_template_a_line_height1em
pagination_font_letter_spacing0px
active_pagination_letter_spacing0px
background_enable_coloron
use_background_color_gradientoff
background_color_gradient_repeatoff
background_color_gradient_typelinear
background_color_gradient_direction180deg
background_color_gradient_direction_radialcenter
background_color_gradient_stops#2b87da 0%|#29c4a9 100%
background_color_gradient_unit%
background_color_gradient_overlays_imageoff
background_color_gradient_start#2b87da
background_color_gradient_start_position0%
background_color_gradient_end#29c4a9
background_color_gradient_end_position100%
background_enable_imageon
parallaxoff
parallax_methodon
background_sizecover
background_image_widthauto
background_image_heightauto
background_positioncenter
background_horizontal_offset0
background_vertical_offset0
background_repeatno-repeat
background_blendnormal
background_enable_video_mp4on
background_enable_video_webmon
allow_player_pauseoff
background_video_pause_outside_viewporton
background_enable_pattern_styleoff
background_pattern_stylepolka-dots
background_pattern_colorrgba(0,0,0,0.2)
background_pattern_sizeinitial
background_pattern_widthauto
background_pattern_heightauto
background_pattern_repeat_origintop_left
background_pattern_horizontal_offset0
background_pattern_vertical_offset0
background_pattern_repeatrepeat
background_pattern_blend_modenormal
background_enable_mask_styleoff
background_mask_stylelayer-blob
background_mask_color#ffffff
background_mask_aspect_ratiolandscape
background_mask_sizestretch
background_mask_widthauto
background_mask_heightauto
background_mask_positioncenter
background_mask_horizontal_offset0
background_mask_vertical_offset0
background_mask_blend_modenormal
custom_buttonoff
button_text_size18
button_bg_use_color_gradientoff
button_bg_color_gradient_repeatoff
button_bg_color_gradient_typelinear
button_bg_color_gradient_direction180deg
button_bg_color_gradient_direction_radialcenter
button_bg_color_gradient_stops#2b87da 0%|#29c4a9 100%
button_bg_color_gradient_unit%
button_bg_color_gradient_overlays_imageoff
button_bg_color_gradient_start#2b87da
button_bg_color_gradient_start_position0%
button_bg_color_gradient_end#29c4a9
button_bg_color_gradient_end_position100%
button_bg_enable_imageon
button_bg_parallaxoff
button_bg_parallax_methodon
button_bg_sizecover
button_bg_image_widthauto
button_bg_image_heightauto
button_bg_positioncenter
button_bg_horizontal_offset0
button_bg_vertical_offset0
button_bg_repeatno-repeat
button_bg_blendnormal
button_bg_enable_video_mp4on
button_bg_enable_video_webmon
button_bg_allow_player_pauseoff
button_bg_video_pause_outside_viewporton
button_use_iconon
button_icon_placementright
button_on_hoveron
positioningnone
position_origin_atop_left
position_origin_ftop_left
position_origin_rtop_left
widthauto
max_widthnone
min_heightauto
heightauto
max_heightnone
filter_hue_rotate0deg
filter_saturate100%
filter_brightness100%
filter_contrast100%
filter_invert0%
filter_sepia0%
filter_opacity100%
filter_blur0px
mix_blend_modenormal
animation_stylenone
animation_directioncenter
animation_duration1000ms
animation_delay0ms
animation_intensity_slide50%
animation_intensity_zoom50%
animation_intensity_flip50%
animation_intensity_fold50%
animation_intensity_roll50%
animation_starting_opacity0%
animation_speed_curveease-in-out
animation_repeatonce
hover_transition_duration300ms
hover_transition_delay0ms
hover_transition_speed_curveease
link_option_url_new_windowoff
sticky_positionnone
sticky_offset_top0px
sticky_offset_bottom0px
sticky_limit_topnone
sticky_limit_bottomnone
sticky_offset_surroundingon
sticky_transitionon
motion_trigger_startmiddle
hover_enabled0
title_text_shadow_stylenone
title_text_shadow_horizontal_length0em
title_text_shadow_vertical_length0em
title_text_shadow_blur_strength0em
title_text_shadow_colorrgba(0,0,0,0.4)
excerpt_text_shadow_stylenone
excerpt_text_shadow_horizontal_length0em
excerpt_text_shadow_vertical_length0em
excerpt_text_shadow_blur_strength0em
excerpt_text_shadow_colorrgba(0,0,0,0.4)
loop_template_meta_text_shadow_stylenone
loop_template_meta_text_shadow_horizontal_length0em
loop_template_meta_text_shadow_vertical_length0em
loop_template_meta_text_shadow_blur_strength0em
loop_template_meta_text_shadow_colorrgba(0,0,0,0.4)
loop_template_meta_a_text_shadow_stylenone
loop_template_meta_a_text_shadow_horizontal_length0em
loop_template_meta_a_text_shadow_vertical_length0em
loop_template_meta_a_text_shadow_blur_strength0em
loop_template_meta_a_text_shadow_colorrgba(0,0,0,0.4)
loop_template_a_text_shadow_stylenone
loop_template_a_text_shadow_horizontal_length0em
loop_template_a_text_shadow_vertical_length0em
loop_template_a_text_shadow_blur_strength0em
loop_template_a_text_shadow_colorrgba(0,0,0,0.4)
pagination_font_text_shadow_stylenone
pagination_font_text_shadow_horizontal_length0em
pagination_font_text_shadow_vertical_length0em
pagination_font_text_shadow_blur_strength0em
pagination_font_text_shadow_colorrgba(0,0,0,0.4)
active_pagination_text_shadow_stylenone
active_pagination_text_shadow_horizontal_length0em
active_pagination_text_shadow_vertical_length0em
active_pagination_text_shadow_blur_strength0em
active_pagination_text_shadow_colorrgba(0,0,0,0.4)
button_text_shadow_stylenone
button_text_shadow_horizontal_length0em
button_text_shadow_vertical_length0em
button_text_shadow_blur_strength0em
button_text_shadow_colorrgba(0,0,0,0.4)
box_shadow_stylenone
box_shadow_colorrgba(0,0,0,0.3)
box_shadow_positionouter
box_shadow_style_productnone
box_shadow_color_productrgba(0,0,0,0.3)
box_shadow_position_productouter
box_shadow_style_grid_list_view_buttonnone
box_shadow_color_grid_list_view_buttonrgba(0,0,0,0.3)
box_shadow_position_grid_list_view_buttonouter
box_shadow_style_buttonnone
box_shadow_color_buttonrgba(0,0,0,0.3)
box_shadow_position_buttonouter
text_shadow_stylenone
text_shadow_horizontal_length0em
text_shadow_vertical_length0em
text_shadow_blur_strength0em
text_shadow_colorrgba(0,0,0,0.4)
disabledoff
global_colors_info{}
0.371915102005 seconds