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EXPERIENCE REPORT
Sustainable generation of patient-led resources in a learning
health system
Jennie David
1
| Catalina Berenblum Tobi
2
| Samantha Kennedy
3
|
Alexander Jofriet
4
| Madeleine Huwe
5
| Rosa Kelekian
6,7
| Melissa Neihart
8
|
Michelle Spotts
9
| Michael Seid
9
| Peter Margolis
9
| ImproveCareNow Pediatric IBD
Learning Health System
1
Psychology Department, Nationwide
Children's Hospital, Columbus, Ohio, USA
2
University of North Carolina at Chapel Hill
School of Medicine, Chapel Hill, North
Carolina, USA
3
Nemours Children's Hospital, Orlando,
Florida, USA
4
The Ohio State University, Columbus,
Ohio, USA
5
Portland Community College, Portland,
Oregon, USA
6
University of California Berkeley, Berkeley,
California, USA
7
UCSF Benioff/Children's Hospital Oakland,
Oakland, California, USA
8
University of Denver, Denver, Colorado, USA
9
Cincinnati Children's Hospital Medical Center,
Cincinnati, Ohio, USA
Correspondence
Jennie David, Psychology Department,
Nationwide Children's Hospital, 700 Children's
Drive, Columbus, OH 43205-2664, USA.
Email: jennie.david@nationwidechildrens.org
Funding information
National Institute of Diabetes and Digestive
and Kidney Diseases; Patient-Centered
Outcomes Research Institute
Abstract
Background: Patient and Family Advisory Councils (PFACs) are an emerging mecha-
nism to integrate patient and family voices into healthcare. One such PFAC is the
Patient Advisory Council (PAC) of the ImproveCareNow (ICN) network, a learning
health system dedicated to advancing the care of individuals with pediatric inflamma-
tory bowel disease (IBD). Using quality improvement techniques and co-production,
the PAC has made great strides in developing novel patient-led resources.
Methods: This paper, written by patients and providers from ICN, reviews current ICN
data on PAC-generated resources, including creation processes and download statistics.
Results: Looking at different iterations of PAC infrastructure, this paper highlights
specific leadership approaches used to increase patient involvement and improve
resource creation. Emerging data suggests that the larger ICN learning health system
has had limited interactions with these resources.
Conclusion: ICN provides a novel approach for meaningful integration of patient
partners into learning health systems. This paper points to the incredible value of
PFAC expertise in the resource creation process. Future work should seek to support
PFAC development across other diseases and address the challenges of integrating
patient-led resources into clinical care.
KEYWORDS
learning health system, patient advisory council, patient engagement, patient resources, QI
1|INTRODUCTION
Co-production, an approach that harnesses the collaboration of service
providers and users, is key in successful learning health systems (LHS).
1
An LHS incorporates science, quality improvement, and culture with
the vision of leveraging all learning opportunities to improve care, its
delivery, and the experience of receiving care.
2
Co-production of
healthcare resources includes patients (“users”) in planning, design, and
delivery of services.
1
Establishing successful co-production systems
can be difficult, particularly in healthcare, requiring collaboration
between patients and physicians. Traditional doctor-patient relation-
ships, where doctors provide expertise and patients passively accept
care, must be redefined in co-production. In the spirit of co-production,
this paper has been authored by patients and providers in an LHS.
Received: 30 October 2020 Revised: 20 January 2021 Accepted: 25 January 2021
DOI: 10.1002/lrh2.10260
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any
medium, provided the original work is properly cited and is not used for commercial purposes.
© 2021 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of the University of Michigan.
Learn Health Sys. 2021;5:e10260. wileyonlinelibrary.com/journal/lrh2 1of9
https://doi.org/10.1002/lrh2.10260
Forming Patient Advisory Councils (PACs) or Patient and Family
Advisory Councils (PFACs) is one way of encouraging collaboration/
co-production within healthcare. PFACs are often considered a valu-
able resource for institutions, with growing recognition of how
patients/families contribute unique voices and perspectives.
3
PFACs
have taken various forms, such as formal meetings led by medical pro-
viders to elicit the patient/family experience
4
or patient/family feed-
back on care.
5
While PFACs help provide much-needed patient/family
representation, physicians and researchers may struggle to integrate
these perspectives in practice.
5-7
To patients/families—and likely the
entire healthcare community—PFACs acknowledge that patient/fam-
ily voices are essential. To the patient co-authors of this paper, this
acknowledgement provides hope about the future of our healthcare.
Though PFACs are considered the gold standard for patient-
centered care, patient/family involvement is often seen as a short-term
endeavor. The literature on PFACs suggests that patient/family roles are
often limited and in many cases serve to greenlight ideas which do not
necessarily reflect their perspectives. Many lack administrative support,
leaving limited opportunities for communication. Additionally, PFACs
have historically been a means to elicit individual patient/family experi-
ences, rather than address the needs of the larger disease community.
When faced with these barriers, patients/families have limited ability to
change healthcare experiences and outcomes. Continual investment in
PFACs is necessary for healthcare organizations that wish to form col-
laborative partnerships and co-produced resources. In the following sec-
tions, we highlight an LHS that has successfully integrated PFACs into
their organization and detail ways in which this particular PFAC's struc-
ture has evolved to support sustainable co-production.
2|CASE STUDY: IMPROVECARENOW
ImproveCareNow (ICN) is an LHS that seeks to transform the health and
care of children and adolescents with inflammatory bowel disease
(IBD).
8,9
Patients, families, clinicians, and researchers work collaboratively
to accelerate innovation and apply knowledge. ICN integrates quality
improvement (QI) science into network practices by which systematic,
iterative changes are made to processes for improvement.
10
ICN was
first formed in 2007 and at present includes over 100 centers in the
United States and abroad, including 38 states and Washington, DC, Bel-
gium, Qatar, and the United Kingdom. In 2011, ICN founded their PAC,
a patient council designed to provide input on research and improve-
ment priorities. The PAC is central to ICN's structure, such that patient
advocates across ICN sites collaborate on a single council at the national
level. PAC members receive QI training through attendance at available
QI training sessions at ICN conferences, archived QI videos from the net-
work, and QI support facilitated by the PAC ICN staff liaison.
As of 2020, the PAC has co-produced nine resources, available within
ICN and the larger healthcare community, through creative commons
licenses. Further publication has beenwrittenontheOstomyToolkitand
the Transfer Toolkit.
11,12
However, literature has not highlighted the novel
processes and structure that allow for sustainable generation of patient-
led, co-produced resources. This paper examines ways in which this PAC
has evolved its structure to increase patient involvement, identify commu-
nity needs, and develop resources by (and for) patients.
To contextualize the work of ICN's PAC, we highlight examples of
PFAC and individual patient/family engagement. The Cystic Fibrosis
Learning Network (CFLN) is another LHS where patients/parents play
essential roles as patient and family partners (PFPs). The CFLN has a
partnership with the Cystic Fibrosis Foundation, which provides many
resources of interest to patients/families (eg, managing CF during col-
lege). Consequently, the PFPs focused on integrating patients/parents
into QI at local and network levels. The PFPs, alongside providers,
received training in QI and prioritized co-production locally to rein-
force centers' interest and involvement of patients/parents; utilizing
patients/families locally shapes the culture of patient/family represen-
tation, fostering sustainability. Importantly, the nature of the disease
and availability of resources within a disease community appear
important in patient/family involvement. The CF community already
had existing patient/parent resources from the CF Foundation, lead-
ing patients/families in the CFLN to invest energy in other activities
to grow patient/family engagement and co-production.
Across healthcare, there are examples of patients and families
who have individually engendered change. For some, they responded
to their children's rare diagnoses to enact change.
13
Other individuals
have tackled technology related to health, like Dana Lewis who lives
with type I diabetes and hacked a glucose monitor to perform tasks
14
;
device manufacturers noticed and integrated this capability into
future devices. Sharon Terry, a mom to children with a rare genetic
condition, felt understandable frustration when researchers would not
share data and recognized the narrowness of research silos, the cul-
ture of competition instead of collaboration, and ultimately the over-
lapping needs of all patients with genetic conditions were poorly
met.
15
Subsequently, Terry built the Genetic Alliance, an advocacy
organization that serves as a megaphone for organizations to
collaborate and optimize innovations. There are likely many patient/
family-driven innovations, with limited media/academic publication to
document these efforts. In all, this paper seeks to describe the novelty
of ICN's PAC and its sustainable generation of patient-led resources.
3|METHODS
Here we discuss the evolution of structural changes to the PAC, cur-
rent PAC structure, engagement of PAC members, generation of
toolkits by the PAC, and how PAC toolkits are reviewed within ICN at
large. Understanding the iterative changes to the PAC's structure,
engagement, and generation of toolkits is vital to the quality improve-
ment soul of the LHS the PAC is embedded within and the PAC's abil-
ity to meaningfully adapt to the community's needs and goals.
3.1 |Structural changes to the PAC
In 2011, ICN's PAC was chaired by a single patient advocate and con-
sisted of virtual communication. Members joined and communicated
2of9 DAVID ET AL.
through Facebook; new members were added to a Facebook group.
Membership during this phase remained limited at approximately
10 patients. While PAC members had a shared sense of purpose, they
lacked resources and procedure during this early stage.
In 2012, the PAC expanded their leadership team to two co-
chairs. To increase involvement, members were encouraged to use
the PAC's designated chat-board to discuss projects. During this time,
the PAC released its first co-produced resource, the Ostomy
Toolkit.
11
The co-chairs designed “task forces”(TFs) to group mem-
bers with similar interests and organize duties. PAC members could
choose to join the Advocacy, Communication, or Recruitment TFs.
Despite these organizational improvements, PAC membership did not
increase, with an average of 11 patients.
Observing limited growth, a series of standardization methods
were implemented in 2015 by new co-chairs. Firstly, monthly all-PAC
calls were implemented to provide regular updates on ongoing pro-
jects. PAC co-chairs and TF leaders also met separately monthly. Sec-
ondly, PAC leadership developed “welcome resources”to provide
new members with relevant information. The Recruitment TF created
a standardized welcome email for new members and connected mem-
bers with a “buddy.”Thirdly, an “Innovation Committee”was formed
to standardize toolkit production. The Innovation committee reviewed
toolkit proposals, discussed project feasibility, and oversaw develop-
ment. Lastly, the PAC advocated for increased funding, to allow more
patients to attend ICN conferences. By doubling the number of
patient representatives at conferences, the patients, parents, and pro-
viders who had co-produced resources had opportunities to meet.
Additionally, this provided visibility and accessibility of the PAC to the
larger ICN network.
3.2 |Current PAC structure
The structure of the PAC has continued to evolve through genera-
tions of patient advocates. In 2018, PAC leadership opted to minimize
role redundancy and maximize engagement opportunities. Leadership
disbanded the Innovation Committee, as it was unneeded due to lim-
ited disputes over toolkit topics and its inclusion added unnecessary
delays to projects. Members of the Advocacy TF subsumed these
activities.
While recruitment had consistently increased in previous years,
the number of actively engaged PAC members continued to stay stag-
nant. Previously, new PAC members were able to choose one of three
TFs (Recruitment, Communications, or Advocacy), but few joined
Communications or Recruitment. Advocacy, however, was over-
whelmed with members, though ongoing engagement remained
challenging.
To remedy these concerns, the Communication TF (responsible
for PAC social media) decreased to two members in 2018. The same
structure was applied to the Recruitment TF in 2019, as their respon-
sibilities could be managed by two members. Instead of choosing a
TF, new members were automatically placed in the Advocacy
TF. New members completed a survey that included questions such
as preferred communication style (eg, text), the number of hours each
week an individual would be able to contribute to a project, and task
preferences (eg, editing). PAC integration appeared faster when join-
ing a working team of patients (eg, an Advocacy project), rather than a
TF with limited collaboration opportunities (eg, social media posts).
Currently, Advocacy TF leads send out monthly surveys, allowing
members to express interest in joining projects. This system allows
members, even those involved in the Communications and Recruit-
ment TFs, to join ongoing projects to promote representation of PAC
voices. As noted previously, the PAC has seen a growth in its repre-
sentation within ICN, where a PAC co-chair currently sits on ICN's
Board of Directors.
Toolkit generation continues to be the main focus of PAC activity.
A following section provides an in-depth look at the PAC's toolkit gen-
eration process.
3.3 |Engagement
The PAC has long experimented with best practices for engaging
members to foster a collaborative and diverse group of patient advo-
cates. In 2018, the Advocacy TF implemented new methods of
engagement, such as “onboarding”calls to meet new members and
better understand their interests. Adding this personalized form of
connection boosted engagement, with increased retention, due to the
electronic nature of most PAC communications.
While onboarding new members via call was effective, it was not
time efficient nor sustainable. Advocacy TF leads began distributing
monthly surveys to gage interest in ongoing projects and learn more
about members' skills and availability. These surveys allowed Advo-
cacy TF leads to more successfully match members with projects that
fit interests and schedules, additionally increasing involvement.
Lastly, the PAC has had success incorporating social “PAC Chats”
and Facebook chat groups. PAC Chats occur a few times monthly and
are opportunities to virtually spend time together. The PAC's
Facebook chat groups include medical conversations, project brain-
storming, official PAC updates, and informal conversation. New mem-
bers can be immediately welcomed by experienced members. These
connection opportunities fulfill a crucial ingredient to engagement:
fostering and building community.
3.4 |Toolkit generation
The main goal across PAC toolkits is to improve the quality of care
and daily life for pediatric patients living with IBD, while addressing
patient/family needs that are unmet in pediatric IBD care due to lim-
ited accessible resources
11
; consequently patient-driven toolkits likely
serve a valuable function for patients/families and providers alike.
Patients may share their experiences and perspectives for different
reasons—to validate their own stories, provide guidance for others,
educate providers, or feel active in their healthcare journey. PAC
toolkits are generated using QI methodology.
11,12
Generally, there are
DAVID ET AL.3of9
five main stages of PAC toolkit development: brainstorming, esta-
blishing a team, collecting content, assembling, and reviewing. These
stages are detailed in Table 1, utilizing clarifying examples from prior
PAC projects.
In early PAC years, toolkit generation was fairly individualized. A
member would recognize a need and create a resource—often devel-
oping, formatting, and authoring the toolkit him/herself. PAC leader-
ship was involved in a limited capacity to offer relevant assistance or
information. While the generation process varied based on the crea-
tor, they would often (a) choose a topic, (b) generate surveys to obtain
qualitative information from other PAC members, (c) consolidate
responses, (d) add relevant commentary, (e) submit the toolkit for
review within ICN (process described later in this paper), and (f) for-
mally publish the toolkit on the ICN website.
In recent years, the Advocacy TF has begun overseeing toolkit
development to standardize processes and encourage contributions
from other PAC members. Toolkit development begins with a toolkit
proposal submitted by a PAC member, later reviewed by the Advo-
cacy TF. A toolkit team is recruited, members meet to delegate tasks,
brainstorm ideas, and create the toolkit. This current structure allows
the Advocacy TF to oversee and support toolkit production, while the
creator manages the project, allowing more PAC members to lead and
co-produce resources. As the PAC has grown increasingly interested
in co-producing resources, a wider range of stakeholders from ICN are
involved, such as dietitians, psychosocial professionals, physicians,
and parents. Most recently, the PAC began experimenting with a vari-
ety of toolkit formats (eg, interactive websites) to increase impact and
accessibility.
3.5 |Reviewing resources within ICN
Because several of the ICN patient-created toolkits include clinically
relevant content, it was critical for the LHS to develop a collaborative
and efficient system for key stakeholders to review and approve
resources. The process for toolkit review begins before the project is
created; when PAC members propose a project and a staff liaison is
informed and shares information with stakeholders in the ICN net-
work. They may recommend clinicians within the network, who can
be consulted throughout the project.
Once the project is completed, a draft is shared with the ICN staff
liaison. The draft is initially reviewed by a specified group within ICN
(the “Engagement Group”), who may raise questions or concerns
about content/formatting. The toolkit is then shared with ICN's clini-
cian networks (physicians, nurses, nutritionists, or social workers),
who review the toolkit's clinical aspects. The draft is then posted to
ICN's online platforms, to elicit feedback from the broader LHS
community.
One challenge that inevitably arises from this process is timeliness
of the review, particularly in cases in which the toolkit includes a
significant amount of clinical content. While all toolkits contain a
standard disclaimer stating that the toolkit content does not consti-
tute medical advice, the review process is crucial to avoid any
misinformation. It is important to ensure that both LHS staff and
patient leaders agree upon the review and approval process to ensure
ongoing collaboration.
4|RESULTS
4.1 |Review of current toolkits
A summary of current toolkits is provided in Table 2. CIRCLE is ICN's
newsletter, which individuals 13 years of age and older can sign up
for biweekly emails and voluntarily identify their stakeholder group
(eg, patient). This table displays data from CIRCLE and non-CIRCLE
sources regarding resource accessibility within the ICN community.
Data from CIRCLE sources represents the number of downloads from
individuals clicking the hyperlinks in CIRCLE emails. Click rate data, as
the term suggests, represents the percentage of email recipients who
clicked on a given hyperlink. Click rate data presented for patients and
parents represents the percentage of patients and parents, self-
identified when signing up for CIRCLE, who clicked on a given hyper-
link. Non-CIRCLE sources represent the number of downloads where
an individual accessed the resource outside of CIRCLE, such as engag-
ing in a web search that directs the individual to an ICN resource. The
average number of CIRCLE downloads was 135.17 with a range of
86 to 160 downloads, and the average number of non-CIRCLE down-
loads was 256 with a range of 109 to 412 downloads. The average
overall CIRCLE click rate was 2.78%, while the average CIRCLE click
rate for patients and parents was 42.59%. Notably, since its creation
in 2017, the average rate of CIRCLE emails being opened is 20.62%
and the average click rate for any link in the CIRCLE email is 2.13%.
5|DISCUSSION
While the PAC's primary role is resource creation, patients are also
involved in projects in the larger ICN network. Alongside provider
partners, PAC members serve in both short- and long-term initiatives.
Patients may contribute to QI initiatives, serve as representatives on
ICN committees, and present at national conferences. Patient repre-
sentation on high-level committees, such as the Board of Directors,
helps to address certain challenges that arise (eg, patients need to
understand clinical language and QI terms). While, historically, PFAC
involvement in organizational decision making is limited, ICN's com-
prehensive incorporation of patient/family partners recognizes the
immense value of PFAC expertise. A visual of the PAC's structure and
toolkit generation process, which summarizes the processes described
above, is included (Table 3).
ICN's PAC represents a novel type of PFAC: one that allows infra-
structure to evolve as community engagement needs arise. As out-
lined previously, the PAC directed its own structural evolution by
identifying community needs (ie, need for toolkits) and making inten-
tional change (eg, the toolkit generation process outlined in Table 1),
enabling sustainable production of these resources. This ability to
4of9 DAVID ET AL.
TABLE 1 Overview of PAC toolkit generation
Section Description Example
Brainstorming PAC toolkit ideas reflect topics that patients and
families deem important. Toolkit topics are often
developed through group brainstorming, such as
during monthly PAC calls, through group chat, or
PAC surveys. Past topics have included ostomy
surgery, body image, nutrition, transitioning to
college, academic and workplace accommodations,
and travel. Decisions regarding which topic(s) will be
developed into a toolkit are made by consensus
among PAC leadership. PAC leadership takes into
consideration available tools within and outside ICN
to broaden the scope of topics addressed. Typically,
the PAC is working to build one to two resources at
any point in time. By consistently identifying
important topics and generating novel resources, the
PAC works to address the patient experience and
perspective in real time
As one example, the initial idea for the IBD and
Disordered Eating Toolkit was generated at an
ICN conference. At the conference, PAC members
discussed the ways IBD has impacted their
thoughts and behaviors regarding food, weight,
and body shape. This led to the proposal of an IBD
and Disordered Eating Toolkit, as many PAC
members felt this would be a meaningful addition
to available resources
Establishing a team After a topic is established, the Advocacy task force
leads assess interest within the PAC via survey. Any
member of the PAC may participate, either in a
leadership role or as a contributor. Toolkit leadership
is generally one or two PAC members who oversee
the design, data collection, synthesis of the resource
content, and review process. If a member with no
previous leadership experience is selected for this
role, a member with prior experience joins as co-lead
and mentor. Once identified, the toolkit leadership
invites contributors to join a toolkit “team,”with a
specific role. Each team is in charge of a different
aspect of the toolkit: developing surveys, conducting
interviews, or doing graphic design, among other
things. The toolkit team connects through virtual
meetings and online communication, facilitated by
the toolkit lead or co-leads. The frequency of toolkit
team meetings, as well as the development schedule,
varies by project
For example, the Lifestyle and IBD Toolkit (a current
project) schedules weekly team meetings to
monitor progress. The Disordered Eating and IBD
Toolkit team met once a month over the course of
4 months, and then transitioned to email
communication on a weekly basis
Collecting content Once a team is established, the content for the toolkit
is collected. When creating resources, the PAC aims
to include all relevant perspectives and experiences,
such as that of the patient and medical professionals,
which the PAC's ICN liaison helps to facilitate. The
toolkit team develops surveys to distribute to the
PAC to gather patient experience. These surveys
often include a mix of quantitative and qualitative
data. The toolkits also contain insights from
professionals involved in the ICN community. In
addition to content gathered through surveys, some
toolkits include data from other credible sources,
such as the Crohn's and Colitis Foundation website,
or academic literature
For example, the IBD Nutrition Toolkit team
collaborated with nutritionists and registered
dietitians within ICN to get a provider perspective.
Similarly, the Disordered Eating and IBD Toolkit
partnered with GI Psychology fellow and former
PAC member, Dr. Jennie David
Assembling content After sufficient content is collected, the assembly
process begins. The team of PAC members arranges
patient stories, professional insights, and research
into a format that is easily accessible to the reader.
While the PAC generally follows a toolkit template
created by ICN, content is organized logically to best
convey information. Historically, some toolkits have
been organized in a slide (presentation) format, and
others in document format
Newer toolkits, such as the Lifestyle and IBD Toolkit
(currently in development), have begun to branch
out in design, utilizing an interactive website
format
DAVID ET AL.5of9
flexibly adapt a PFAC structure to meet identified community needs is
essential for genuine integration of a PFAC into an LHS. While the
PAC has previously published on individual patient-driven co-
produced resources,
11,12
this paper aims to summarize the larger sus-
tainable mechanism that turns patient experiences and needs into
resources, by and for patients. Other patient/parent-driven innova-
tions, like the emergence of the Genetic Alliance, are powerful, but
may engender concern because innovations that depend on a single
individual may not be sustainable.
One of the most notable strengths of ICN is the opportunity for
collaboration between patients, families, physicians, and care pro-
viders. These mechanisms allow strong partnerships to form, crucial
for the co-production of resources. While this LHS has successful
mechanisms in place to develop resources, integrating these co-
produced resources into medical care has proved challenging.
5.1 |Challenges integrating resources into care
Traditional healthcare places the responsibility for patient education
on providers with specialized expertise. The PAC represents comple-
mentary expertise of lived experience. The benefits of patient-
physician collaboration have been previously published,
2,9,11,12,16
but
efforts to integrate patient expertise are stymied by barriers, such as
the challenge of having a patient expert available. Within ICN, co-
production of toolkits is one solution that addresses gaps in care.
11,12
TABLE 2 Overview of PAC toolkits
Toolkit Toolkit summary Toolkit members
Year
published
CIRCLE
downloads
CIRCLE
overall
click rate
CIRCLE patient/
parent click rate
Non-CIRCLE
overall
downloads
The Transfer
Toolkit
This toolkit describes notable
skills and considerations for
adolescents approaching
transition and transfer to adult
care
Patients, psychologists,
dietitians, social
workers, physicians,
nurses
2018 118 3.71% 31.36% -
Travel Toolkit This toolkit describes
experiences and
considerations for individuals
with IBD to make travel
comfortable and easier
Patients 2018 - - - 172
Crohn's and
Colitis
Storybook
This toolkit describes various
perspectives from individuals
with IBD on diverse topics,
such as self-care and
relationships
Patients 2017 - - - 109
Ostomy Toolkit This toolkit describes the
experiences of individuals who
underwent temporary or
permanent ostomy surgery
Patients, parents 2015 - - - 151
Nutrition and IBD
Toolkit
This toolkit describes
perspectives of individuals
with IBD on various nutritional
therapies
Patients, dietitians 2019 152 4.18% 51.97% 333
Disordered
Eating and IBD
Toolkit
This toolkit describes
experiences of individuals with
IBD on disordered eating
behaviors
Patients, psychology
provider
2020 160 3.6% 41.88% -
College and IBD
Toolkit
This toolkit describes resources
of interest to adolescents with
IBD transitioning to college
Patients 2019 155 4.6% 45.16% 412
Body Image and
IBD Toolkit
This toolkit describes
experiences of individuals with
IBD on body image concerns
Patients 2018 86 2.72% - -
Accommodations
for IBD Toolkit
This toolkit describes various
educational and occupational
accommodations for
individuals living with IBD and
perspectives from individuals
with IBD
Patients, social workers 2018 140 3.81% - 359
6of9 DAVID ET AL.
However, these resources are wasted if they cannot be easily inte-
grated into care. When surveyed regarding one PAC resource, pro-
viders reported several reasons for limited use, including competing
clinical demands.
12
Despite challenges, resources derived from patient expertise have
benefits to children and adolescents with IBD. To balance maintaining
clinic efficiency while incorporating new clinical resources, one ICN
clinic used a “scale-up”approach, starting with one PAC toolkit and
then expanding to other clinical settings and other toolkits. Another
ICN site has included a list of PAC toolkits in the After Visit Summary
for all IBD outpatient visits. Ongoing work to use QI methodology to
pilot, track, and evaluate mechanisms to integrate resources into care
is needed. Additional work is also needed in evaluation of these co-
produced resources, such as understanding how patients/families
come to receive toolkits (eg, by medical providers), perceived utility
and satisfaction of toolkits by patients/families, and possible changes
in patient/family levels of anxiety or stress upon engagement with
toolkits.
In addition to challenges integrating co-produced resources into
clinical care, emerging data (Table 1) demonstrate difficulties in
TABLE 3 Visual of PAC structure and toolkit generation flow
ImproveCareNow
Patient Advisory Council
Communications
Task Force
Recruitment
Task Force
Advocacy
Task Force
Toolkit Generation
1. Brainstorming
2. Establishing a Team
3. Collecting Content
4. Assembling Content
Review of Toolkit by ICN
Revisions to Toolkit as Needed
Dissemination of Toolkit with
ImproveCareNow
Engagement
DAVID ET AL.7of9
making resources accessible within the larger ICN community. Overall
click rates suggest a very low figure of less than 5%. Interestingly, the
click rate appears to increase among patients/parents, ranging from
approximately 31% to 52%. Compared to average click rates for all
links in CIRCLE emails, which was just over 2%, the click rate on
toolkits is notably higher. This exploratory data suggests higher
engagement among patients/parents compared with the larger ICN
community. While this is encouraging that patients/parents are inter-
ested in these resources, it also presents concerns regarding the lim-
ited engagement of other ICN stakeholders, such as physicians.
As previous qualitative work from ICN posits that patients/fami-
lies prefer receiving information from their clinicians,
17
this poses a
challenge for disseminating resources. For example, a patient/family
who learns about a patient-led resource from a CIRCLE newsletter
may be less receptive than if their gastroenterologist (GI) provider had
shared this resource. While all PAC toolkits were vetted by medical
providers, there may be limited awareness about the toolkits among
ICN providers and, consequently, limited awareness among their
patients/families. Future QI efforts should focus on engaging ICN pro-
viders to improve the reach of these valuable resources.
Notably, while this paper discusses the novel structure of the PAC
within an LHS and its ability to sustainably generate patient-driven
resources, questions remain related to the broader issue of sustainable
use and implementation of these resources within the LHS. These ques-
tions go beyond the current scope of this paper, while also producing an
essential need for further research and understanding of if and how
these resources can be sustainably integrated into care delivery.
5.2 |Limitations
While we wish to share these strategies to support other PFACs, it is
important to address some potential limitations of our findings. First,
different diseases (or disease communities) may have varied needs. It
is possible that our experiences working within an LHS focused on
pediatric IBD are distinct from another disease community, and our
processes may require adaptations. As such, our work should be con-
sidered as a case study for co-producing resources.
While ICN's PAC has grown and diversified significantly in the
past few years, our group cannot possibly represent the voices of all
patient experiences. Since these patient-driven resources were largely
informed by the experiences of PAC members, patients outside of the
PAC (or in other disease communities) may express different opinions
or methods for patient involvement. It is our hope that with continued
efforts to diversify the PAC, our resources will continue to highlight
even more diverse patient voices.
Lastly, we wish to draw attention to the lack of current academic
literature capturing present patient/parent-driven innovations. For
example, a paper summarizing the ostomy toolkit was published in
2018, which represents a 3-year time delay from when the resource
was finalized in 2015. A delay in publishing may mean that literature
searches are not up to date on innovations in the fields of PFACs and
co-production in healthcare. These delays also likely represent the
barriers and challenges of publishing academic work, and patient
advocates may not have expertise in this domain. Lastly, at present
there is limited systematic evaluation of these ICN PAC resources
following distribution, and their impact (eg, on psychosocial coping) is
unknown. While these limitations are critical in understanding the
context of this paper, the innovations led by ICN's PAC are emblem-
atic of a larger and notable shift in the sustainable development of
patient resources. These limitations also serve as a call to action to
improve the translation of patient/family innovations into the aca-
demic literature to allow for timely knowledge and understanding of
such innovations.
5.3 |Implications
The sustainable generation of patient-driven resources described here
can serve as a case report for co-produced patient-driven innovations.
Virtually all toolkits developed by ICN's PAC were driven directly by
patient experience and needs. The evolving structure, scope, and sup-
port from ICN has provided a sustainable mechanism to translate the
patient community's needs into tangible and sharable resources. This
serves as a reminder that patients have the capacity, passion, and abil-
ity to lead and co-produce meaningful resources. When provided with
opportunities for collaboration, patients and families can bring incredi-
ble advancements to the healthcare field.
ACKNOWLEDGMENTS
The authors would like to gratefully acknowledge the ImproveCareNow
Network and its centers (https://www.improvecarenow.org/). They
would like to sincerely acknowledge the following individuals—patients
and providers—who contributed to toolkits described in this paper:
Becky Woolf, Megan Drovetta, MaiKu Moua, Sydney Ford, Tyler Moon,
Missy Neihart, Bianca Siedlaczek, Chloe Sayers, Maddie Ferguson, Grady
Stewart, Natalie Beck, Linden Cundiff, Nour Al-Timimi, Mahalakshmi
Parakala, Brady Oakes, Fionna Kopp, Gabi Labovitz, Zehra Al-Timimi,
Greta Breskin, Teresa Lee, Kay Mullin, Elizabeth Rogers, Natalie Stoner,
Kristen Buckingham, Ethan Fitter, Sharon Fitter, Bianca Siedlaczek,
Cinda Lemont, Christian Hanson, Nicki Redmond, Zehra Al-Timini, Sarah
Bivona, Taylor Heppner, Emily Jones, Hindy Klein, Randa Samaha, Abi-
gail Sandifer, Chloe Sayers, Rebecca Schinkel, Michele Maddux, and the
contributors to the Transfer Toolkit and the Crohn's and Colitis Story-
book. The authors would also like to thank Mary Havens for her help
and support with this manuscript. ImproveCareNow has received sup-
port from the participating care centers, the National Institute of Diabe-
tes and Digestive and Kidney Diseases, and the Patient-Centered
Outcomes Research Institute.
CONFLICT OF INTEREST
The authors have no conflicts of interests to disclose.
ORCID
Jennie David https://orcid.org/0000-0002-6340-7663
Michael Seid https://orcid.org/0000-0001-9773-9263
8of9 DAVID ET AL.
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How to cite this article: David J, Berenblum Tobi C,
Kennedy S, et al. Sustainable generation of patient-led
resources in a learning health system. Learn Health Sys. 2021;
5:e10260. https://doi.org/10.1002/lrh2.10260
DAVID ET AL.9of9
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