lucile packard foundation for children’s health · 2019. 12. 19. · the lucile packard...

LUCILE PACKARD FOUNDATION FOR

CHILDREN’S HEALTH Grantee Survey

Public Health Institute – Survey Research Group May 2019

Prepared for Lucile Packard Foundation for Children’s Health

Prepared by Public Health Institute – Survey Research Group

Correspondence Rebecca L. Garrow, MPH

916-779-0323 [email protected]

Report Authors Rebecca L Garrow, MPH

Kyli Gallington, MPH Suzanne Ryan-Ibarra, PhD, MPH

Eric Stewart Marta Induni, PhD

Submitted: May 23rd, 2019

mailto:[email protected]

Contents Executive Summary ................................................................................................................................. i

Purpose ................................................................................................................................................... 1

Methods ................................................................................................................................................. 1

Sample ................................................................................................................................................ 1

Survey Instruments ............................................................................................................................. 1

Response Rate .................................................................................................................................... 1

Analysis ............................................................................................................................................... 2

Results .................................................................................................................................................... 3

Characteristics of Respondents ........................................................................................................... 3

Impact of Foundation Funding ............................................................................................................ 9

Discussion ............................................................................................................................................. 16

Recommendations ............................................................................................................................ 16

Conclusion ............................................................................................................................................ 16

Appendix I: Tables of Report Figures ..................................................................................................... 18

Appendix II: Summary Tables................................................................................................................ 22

Appendix III: Tables of All Findings ........................................................................................................ 28

Current Grantees ............................................................................................................................... 28

Former Grantees ............................................................................................................................... 42

Appendix IV: Survey Instruments .......................................................................................................... 51

i

Executive Summary Purpose

The Public Health Institute (PHI) was hired as an external evaluator to gather feedback from grantees to assess the impact of the Lucile Packard Foundation for Children’s Health’s (LPFCH) grantmaking program on the system of care for children with special health care needs (CSHCN). The goal of this data collection effort was to gather information to help the Foundation better serve the field, assess the impact of awarded grants, and strengthen its grantmaking program.

Methods

Current LPFCH grantees (n=37) and former LPFCH grantees (n=42) were sent a link to complete a web-based survey. Twenty former grantees and 26 current grantees completed the online survey, bringing the overall response rate to 58%. Current grantees had an active LPFCH grant and former grantees had received funding from LPFCH between late 2009, when the grantmaking program’s focus on CSHCN was established, through June of 2015.

Results

Over half of all respondents had been working on CSHCN issues for over ten years, indicating that LPFCH is tapping in to national expertise through their grantmaking and has partnerships with organizations and individuals that have a significant amount of experience. While LPFCH is focused on system improvement in California, the reach of their funding goes beyond the state; about one-third of respondents reported that the geographical focus of their work was national. Furthermore, half of all grantees reported that their project activities continued after their funding concluded, suggesting that the return on investment for the LPFCH projects may be quite high. Four out of five former grantee respondents reported that their grant(s) from the Foundation had influenced their work since 2015, even in the absence of additional funding from the Foundation.

Over two-thirds of current grantee respondents indicated that their grant from the Foundation had an effect on the system of care for CSHCN (71%). Ninety-six percent of current grantee respondents strongly agreed that the Foundation’s work had enhanced the body of knowledge about the system of care for CSHCN.

Discussion

The LPFCH grantmaking program is meeting Foundation goals to develop and implement strategies to improve the system of care for children and youth with special health care needs and is having a significant impact in the field, both nationally and in the state. LPFCH funding is having a noticeable, positive effect on organizations, particularly by enhancing the body of knowledge about and influencing public policy on the system of care for CSHCN.

Recommendations for the future of the grantmaking program at the Foundation include:

1. Continue to provide CSHCN grant funding opportunities. 2. Increase focus on direct advocacy. 3. Expand networking and dissemination opportunities.

Conclusion

The results presented in this report will help inform and assess the impact of the Lucile Packard Foundation for Children’s Health’s grantmaking program on the system of care for children with special

ii

health care needs. These insights and recommendations can help the Foundation better serve the field and strengthen its grantmaking program.

1

Purpose The Lucile Packard Foundation for Children’s Health’s (LPFCH or Foundation) vision is that all children in the communities they serve will reach their maximum health potential. The grantmaking program’s goal is to promote a system of care that improves the lives of children with special health care needs (CSHCN) and their families. Public Health Institute’s Survey Research Group (SRG) was hired as an external evaluator to administer three surveys to assess the impact of LPFCH’s work, specifically regarding their grantmaking and Kidsdata programs.

The purpose of the two grantmaking program surveys was to gather feedback from current grantees to help the Foundation better serve the field, assess the impact of awarded grants, and strengthen its grantmaking program and to conduct a follow-up survey with former grantees to enable staff to learn about the impact, next steps, and longer-term effects of past grant-funded projects. A separate, companion report describes the results of the third survey, which was conducted to assess the impact of the Kidsdata program.

Methods Sample Contact information for current LPFCH grantees (n=37) and former LPFCH grantees (n=42) was provided by Foundation program staff. LPFCH grantees were considered current grantees if they had an active LPFCH grant and had received funding between July of 2015 and October of 2018. LPFCH grantees were considered former grantees if they had received funding from LPFCH between late 2009, when the grantmaking program’s focus on CSHCN was established, through June of 2015.

Survey Instruments Two separate survey instruments were created: one for former and one for current grantees. The survey introduction specified that all answers would be kept anonymous to Foundation staff and responding to the survey would not impact current or former grantees or their funding in any way. The survey included open- and close-ended questions about the grantmaking program’s impact and outcomes, as well as suggestions for the Foundation’s future programmatic activities. Both surveys were programmed in LimeSurvey. Respondents were allowed to skip any question they did not wish to answer. Number of respondents (n) for each question may not be the same because some respondents chose not to answer specific questions. It took respondents an average of 21 minutes to complete the current grantee survey and 17 minutes to complete the former grantee survey.

Data collection procedures were identical for both current and former grantees. Data were collected over the course of 17 days from Wednesday, January 23rd, 2019 through Tuesday, February 12th, 2019. Emails were sent to 37 Current Grantees and 42 Former Grantees, inviting them to complete an online survey. Non-respondents were reminded 3 times to complete the survey. The email invitation containing the survey link included a description of the purpose of the survey and a request for participation.

Response Rate Twenty former grantees and 26 current grantees completed the online survey, bringing the overall response rate to 58% (response rates were 48% for former grantees and 70% for current grantees).

2

Analysis Descriptive statistics and text analysis were generated by the Limesurvey software. The responses generated from Limesurvey were exported into Excel Professional and further analyzed using SAS 9.4. For this analysis, responses from current and former grantees were combined. Responses to questions that were only asked of one group of respondents are noted. Disaggregated data from current and former grantees are presented in Appendix III. The number and percentage of respondents for each close-ended response were tallied. Responses to open-ended questions were reviewed and coded for themes. When possible and as appropriate, responses to open-ended questions, and questions that had an “other” category, were recoded into the existing question response categories. For analysis, the responses to the survey were not linked to identifying information of the individual respondents.

This report includes results of the grantee surveys and recommendations to help the Foundation better serve the field, assess the impact of awarded grants, and strengthen its grantmaking program.

3

Results Characteristics of Respondents The majority of survey respondents worked for an academic institution (including children’s hospitals) (62%) (Figure 1). Other types of organizations that respondents worked for were advocacy organizations (16%) and policy research organizations (9%).

Figure 1

62%

16%9%

4% 4% 2% 2%0%

10%

20%

30%

40%

50%

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90%

100%

Academicinstitutionincludingchildrenshospital

Advocacyorganization

Policy researchorganization

(non-academic)

Public agency Nonprofitorganization

Professionalmembershiporganization

Other

What is your organization's primary role in the system of care for CSHCN? (n=45)

4

Most respondents self-identified as an academic researcher (58%) or nonprofit staff member (16%) (Figure 2).

Figure 2

58%

16%9%

4% 4% 4% 4%

0%

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Academicresearcher

Nonprofit staffmember

Non-academicresearcher

Privateconsultant

Advocate Public agencystaff member

Other

What is your primary role in your organization as it pertains to your work on the grant(s) from the Foundation? (n=45)

5

Over half of all respondents (56%) had been working on CSHCN issues for ten or more years (Figure 3).

Figure 3

56%

9%

29%

7%

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10+ years 7-9 years 4-6 years Less than 4 years

How long have you been working on issues realted to CSHCN? (n=45)

6

Over two-thirds of respondents indicated the geographical focus of their organization’s grant(s) from the Foundation was California (69%) (Figure 4). About one-third of respondents reported that the geographical focus of their organization’s grant(s) from the Foundation was national (31%).

Figure 4

69%

31%

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California National

What is the geographical focus of your organization's grant(s) from the Foundation? (n=45)

7

Most respondents were focused on systems, models, and best practices with respect to their LPFCH funding (44%); policy and policy advocacy (20%), and care coordination and medical home (18%) were the second and third highest reported primary areas of focus, respectively (Figure 5).

Figure 5

44%

20% 18%

9% 7%2%

0%

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20%

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50%

60%

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100%

Which of the following topic areas best describe the primary focus of your grant(s) from the Foundation? (n=45)

8

About one-third of respondents (29%) received between $10,000-$50,000 in funding from the Foundation (Figure 6). Another one-third (29%) received over $200,000 in funding from the Foundation.

Figure 6

9%

29%

18% 16%

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Less than $10,000 $10,000 to $50,000 $50,001 to $100,000 $100,001 to $200,000 Greater than $200,000

What is the total amount of funding you have received from the Foundation? (n=45)

If you have received more than one grant from the Foundation, please sum the funding received.

9

Impact of Foundation Funding As a result of LPFCH funding, respondents reported their organizations were able to expand existing programs (45%) and establish new programs (38%) (Figure 7). One respondent indicated that their county collaborative “…was able to train three other counties in care coordination for CSHCN…”, while another respondent stated their organization was able to “…obtain funding to create a complex care program” at a university in California. A third respondent was pleased that their grant was able to support efforts to “…reach key stakeholders… who have not focused much attention on children and youth with special health care needs…”

Figure 7

Totals do not add up to 100% because grantees were permitted to choose more than one response.

45%

38%

31%

12%

19%

0%

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100%

Expand existingprogram

Establish newprograms

Shift the focus of myorganization's work

Maintain existingprograms

Other

What effects did the grant(s) from the Foundation have on your organization's work? (n=42)

The grant also led to increased focus within our organization on better understanding

what pediatricians (primary care and subspecialty) require in order to improve

the system of care for children [with] special health care needs. Because of the grant, this

topic was on our agenda for every board meeting for several years and has become an

ongoing priority for us. – Former Grantee

10

The majority of respondents were able to create new professional relationships for their organization (69%), broaden their organizational understanding of the health care system (67%), and increase their organization’s visibility in the field (67%) as a result of their grant(s) from the Foundation (Figure 8). Half of respondents report project activities continued after their funding concluded (50%).

Over two-thirds of former grantee respondents (67%) had published the results of their Foundation-funded projects. Several current grantees gave examples of the type of work their organization had undertaken including one respondent noted that their work had been accepted for dissemination at several state and national levels, another mentioned presenting at two recent healthcare conferences, and a third noted that they had received several consultation requests as a result of funding.

Figure 8


69% 67%62%

50%43%

38%

24% 21%

7%

0%

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100%

What tangible outcomes has your organization achieved as a result of your grant(s) from the foundation? (n=42)

We now have leveraged additional funding for several years that is helping us be the

primary facilitator of [County] becoming a Trauma-Informed County System of Care

for all children and families. – Former Grantee

11

Former grantees were asked if their grant(s) from the Foundation had influenced their work since 2015. Four out of five former grantee respondents (83%) reported that their grant(s) from the Foundation had influenced their organization’s work since 2015, even in the absence of additional funding from the Foundation (Figure 9). Identifying gaps in services, refining focus areas and resources, aligning with national efforts, and disseminating results/sharing outcomes at the state and national level were several positive influences that respondents mentioned.

Figure 9

83%

17%

0%

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Yes No

FORMER GRANTEES: Has the grant(s) from the Foundation influenced your organization's work since 2015? (n=18)

The grant from the Foundation allowed us to understand the problem, as well as gaps in care for CSHCN. It facilitated the introduction of different

partners and resources within the community. It facilitated development of a program plan that is scalable, and translocatable. This work, towards implementation and model demonstration, has

continued since completion of the grant. - Current Grantee with additional past LPFCH

grant funding

12

According to respondents, funding from LPFCH also assisted them as individuals in professional growth, networking and development. Most respondents indicated that as a result of this funding, they had created new professional relationships (83%), increased their visibility in the field (69%), broadened their understanding of the health care system (64%), and/or were able to speak about their LPFCH funded work at a conference or convening (60%) (Figure 10). Thirty-eight percent of respondents had published results of their project. Over one-third of respondents felt funding from the Foundation had positively redirected their career (38%). No respondents felt that their career was negatively redirected as a result of a grant from the Foundation.

Figure 10


83%

69%64%

60%

38% 38%

7%

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What tangible outcomes did you achieved, as an individual, as a result of your grant(s) from the Foundation? (n=42)

13

Over two-thirds of current grantee respondents indicated that their grant from the Foundation had an effect on the system of care for CSHCN (71%) (Figure 11). One current grantee stated that their “…work has increased public awareness of certain complex issues involving care for CSHCN.” In response to open-ended questions, several current grantee respondents indicated that they were in the infancy of their project funding, which had limited their ability to affect the system of care so far. However, some mentioned that effects were already notable; one respondent mentioned that engagement had increased, specifically mentioning that as a result of their funding, “…family members are actively engaged in systems of care for CSHCN; meaningful participation on boards, task forces, decision making committees, and legislative advocacy regarding CSHCN.”

Figure 11

71%

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Yes No

CURRENT GRANTEES: Has your grant(s) from the Foundation had an effect on the system of care for CSHCN? (n = 24)

It directly shakes up the way children with complex

special health care needs receive care in a model that

increases support and addresses social

determinants of health. - Current Grantee

14

All current grantee respondents strongly agreed or agreed that the Foundation staff understood the system of care for CSHCN (100%) , and that the Foundation’s work had enhanced the body of knowledge about the system of care for CSHCN (100%) (Table 1)

Table 1

CURRENT GRANTEES: LPFCH Impacts on CSHCN Strongly

Agree/Agree Strongly Disagree/ Disagree

Don’t Know

n % n % n %

The Foundation has had an impact on public awareness of issues related to the system of care for CSHCN.

22 96% 0 0% 1 4%

The Foundation staff understands the system of care for CSHCN.

23 100% 0 0% 0 0%

The Foundation's work has enhanced the body of knowledge about the system of care for CSHCN.

23 100% 0 0% 0 0%

The work of the Foundation is likely to influence public policy around the system of care for CSHCN.

22 100% 0 0% 0 0%

The work of the Foundation is likely to influence programs serving CSHCN.

21 95% 0 0% 1 5%

The Foundation staff understands the social factors that affect the care of CSHCN.

22 96% 0 0% 1 4%

The Foundation staff understands the economic factors that affect the care of CSHCN.

22 96% 0 0% 1 4%

15

Respondents were asked to describe activities with which the Foundation might have helped them, or could help them now, that would advance their work related to the care of CSHCN.

Current and former grantee respondents were asked to suggest topics or issues related to improving the system of care for children with special health care needs that the Foundation should address in the future. While most respondents had positive experiences to share and were content with the Foundation’s efforts, direct advocacy was called out as a specific area of potential future focus.

Supporting conferences or convening where discussions about issues impacting CSHCN can happen and relationships can be expanded between advocates, providers and families/consumers.

– Current Grantee

Their investments in our work have made a significant impact on our ability to keep issues specific to CYSHCN at the fore of state health policymakers [sic] agendas.

– Current Grantee

We had great support on our study, and the Foundation helped to disseminate the results on their website and in their newsletter afterwards. We were really happy with the support.

– Current Grantee with additional past LPFCH grant funding

I wish the Foundation would fund more aggressive direct advocacy. I think the Foundation would find they could get a lot of bang for their buck if they prioritized funding direct advocacy.

– Current Grantee

They are addressing everything that is pertinent and are at the forefront of improving systems and children's health.

– Current Grantee

16

Discussion Over half of all respondents had been working on CSHCN issues for over ten years, indicating that LPFCH is tapping in to national expertise in their grantmaking and work with organizations and individuals. While LPFCH is focused on system improvement in California, the reach of their funding goes beyond the state; about one-third of respondents reported that their geographical focus was national. Furthermore, half of all grantees reported that their project activities continued after their funding concluded, suggesting that the return on investment for the LPFCH projects may be quite high.

LPFCH funding is having a positive effect. Over two-thirds of current grantees indicated that their grant from the Foundation had an effect on the system of care for CSHCN, and four out of five former grantees reported that the grants from the Foundation had influenced their organization’s subsequent work.

Feedback was overwhelmingly and almost unanimously positive for Foundation staff and programs. Respondents agreed that Foundation staff understood economic factors, social factors, and the system of care, for CSHCN. Specifically, 100% of respondents “agreed” or “strongly agreed” that Foundation staff understood the system of care for CSHCN, the work of the Foundation was likely to influence public policy around the system of care for CSHCN, and, that the Foundation's work had enhanced the body of knowledge about the system of care for CSHCN.

The results from this survey indicate LPFCH is meeting Foundation goals to develop and implement strategies to improve the system of care for children and youth with special health care needs and are having a significant impact in the field, both nationally and in the state.

While the results in this report may not represent views and experiences of all current and former grantees, 70% of current and almost half of former grantees responded to the survey and provided feedback. The results from this survey are in line with results from previous survey data from LPFCH grantees.

Recommendations 1. Continue to provide CSHCN grant funding opportunities. Feedback is overwhelmingly

positive for Foundation staff and programs, and the majority of respondents agreed that their grant from the Foundation had an effect on the system of care for CSHCN and positively influenced their organization’s work.

2. Increase focus on direct advocacy. For 20% of respondents, policy and policy advocacy was called out as a specific area of potential future focus for LPFCH.

3. Expand networking and dissemination opportunities. Dissemination of project results was specifically mentioned as a positive outcome of grant funding, as were opportunities for cross-organizational collaboration and partnerships. Although the majority of grantees were able to create new professional relationships and were able to publish their project findings as a result of the grant(s) they received, additional support could be provided in this area by Foundation staff to ensure every grantee is able to do this.

Conclusion The results presented in this report will help inform and assess the impact of the Lucile Packard Foundation for Children’s Health’s grantmaking program on the system of care for children with special

17

health care needs. These insights and recommendations can help the Foundation better serve the field, assess the impact of awarded grants, and strengthen its grantmaking program.

18

Appendix I: Tables of Report Figures

Table for Figure 1

What is your organization’s primary role in the system of care for CSHCN? (n=45) n %

Academic institution including children’s hospital 28 62% Advocacy organization 7 16% Policy research organization (non-academic) 4 9% Public agency 2 4% Nonprofit organization 2 4% Professional membership organization 1 2%

Other 1 2%

Table for Figure 2

What is your primary role in your organization as it pertains to your work on the grant(s) from the Foundation? (n=45)

n % Academic researcher 26 58% Nonprofit staff member 7 16% Non-academic researcher 4 9% Private consultant 2 4% Advocate 2 4% Public agency staff member 2 4% Other 2 4%


Table for Figure 3

How long have you been working on issues related to CSHCN? (n=45) n %

10+ years 25 56% 7-9 years 4 9% 4-6 years 13 29% Less than 4 years 3 7%

19

Table for Figure 4

What is the geographical focus of your organization's grant(s) from the Foundation? (n=45)

n %

California 31 69% National 14 31%

Table for Figure 5

Which of the following topic areas best describe the primary focus of your grant(s) from the Foundation? (n=45)

n % Systems, models and best practices 20 44% Policy and policy advocacy 9 20% Care coordination and medical home 8 18% Family-engagement 4 9% Evaluating children’s health care 3 7% Coverage, benefits, and access 1 2%

Table for Figure 6

What is the total amount of funding you have received from the Foundation? If you have received more than one grant from the Foundation, please sum the funding received. (n=45)

n %

Less than $10,000 4 9% $10,000 to $50,000 13 29% $50,001 to $100,000 8 18% $100,001 to $200,000 7 16% Greater than $200,000 13 29%

20

Table for Figure 7

What effects did the grant(s) from the Foundation have on your organization's work? (n=42)

n %

Expand existing program 19 45% Establish new programs 16 38% Shift the focus of my organization's work 13 31% Maintain existing programs 5 12% No effect 2 5% Narrow the focus of my organization's work 0 0% Other 8 19%


Table for Figure 8

What tangible outcomes has your organization achieved as a result of your grant(s) from the Foundation? (n=42)

n % Created new professional relationships 29 69% Broadened our understanding of the health care system 28 67%

Increased our visibility in the field 26 62% Project activities continued after funding 21 50%

Publication of project results (e.g., in an academic journal) 18 43%

Facilitated obtaining new funding 16 38% Replication of our work by other organizations 10 24%

Media coverage of our work 9 21% Other 3 7%


21

Table for Figure 9

FORMER GRANTEES: Has the grant(s) from the Foundation influenced your organization's work since 2015? (n=18)

n % Yes 15 83% No 3 17%

Table for Figure 10

What tangible outcomes did you achieve, as an individual, as a result of your grant(s) from the Foundation? (n=42)

n %

Created new professional relationships 35 83% Increased my visibility in my field 29 69% Broadened my understanding of the health care system 27 64% Prompted invitations to speak about my work at a conference or convening

25 60%

Publication of project results (e.g., in an academic journal) 16 38% Positively redirected my career 16 38% Other 3 7%

Negatively redirected my career 0 0% Totals do not add up to 100% because grantees were permitted to choose more than one response.

Table for Figure 11


n % Yes 17 70.8 No 7 29.2

22

Appendix II: Summary Tables

Appendix Table 1

What is your organization’s primary role in the system of care for CSHCN? Former Grantees

(n=20) Current

Grantees (n=25)

Total (n=45)

n % n % n %

Academic institution including children’s hospital

16 80% 12 48% 28 62%

Advocacy organization 1 5% 5 24% 7 16% Policy research organization (non-academic)

1 5% 3 12% 4 9%

Public agency 1 5% 1 4% 2 4% Nonprofit organization 0 0% 2 8% 2 4% Other 1 5% 0 0% 1 2%

Professional membership organization 0 0% 1 4% 1 2%

Appendix Table 2

What is your primary role in your organization as it pertains to your work on the grant(s) from the Foundation?

Former Grantees (n=20)

Current Grantees (n=25)

Total (n=45)

n % n % n %

Academic researcher 15 75% 11 44% 26 58% Nonprofit staff member 1 5% 6 24% 7 16% Non-academic researcher 0 0% 4 16% 4 9% Private consultant 1 5% 1 4% 2 4% Advocate 0 0% 2 8% 2 4% Public agency staff member 2 10% 0 0% 2 4% Other 1 5% 1 4% 2 4%


23

Appendix Table 3

How long have you been working on issues related to CSHCN? Former Grantees

(n=20) Current Grantees

(n=25) Total (n=45)

n % n % n %

10+ years 13 65% 12 48% 25 56% 7-9 years 2 10% 2 8% 4 9% 4-6 years 5 25% 8 32% 13 29% Less than 4 years 0 0% 3 12% 3 7%

Appendix Table 4

What is the geographical focus of your organization's grant(s) from the Foundation?

Former Grantees


(n=25) Total (n=45)

n % n % n %

California 14 70% 17 68% 31 69% National 6 30% 8 32% 14 31%

Appendix Table 5

Which of the following topic areas best describe the primary focus of your grant(s) from the Foundation?



Total (n=45)

n % n % n %

Systems, models and best practices 10 50% 10 40% 20 44% Policy and policy advocacy 1 5% 8 32% 9 20% Care coordination and medical home 6 30% 2 8% 8 18% Family-engagement 1 5% 3 12% 4 9% Evaluating children’s health care 2 10% 1 4% 3 7% Coverage, benefits, and access 0 0% 1 4% 1 2%

24

Appendix Table 6

What is the total amount of funding you have received from the Foundation? If you have received more than one grant from the Foundation, please sum the funding received.

Former Grantees


(n=25) Total (n=45)

n % n % n %

Less than $10,000 2 10% 2 8% 4 9% $10,000 to $50,000 9 45% 4 16% 13 29% $50,001 to $100,000 2 10% 6 24% 8 18% $100,001 to $200,000 2 10% 5 20% 7 16% Greater than $200,000 5 25% 8 32% 13 29%

Appendix Table 7

What effects did the grant(s) from the Foundation have on your organization's work?

Former Grantees

(n=18) Current

Grantees (n=24) Total (n=42)

n % n % n %

Expand existing program 7 39% 12 50% 19 45% Establish new programs 7 39% 9 38% 16 38% Shift the focus of my organization's work

6 33% 7 29% 13 31%

Other 4 22% 4 17% 8 19%

Maintain existing programs 1 6% 4 17% 5 12% No effect 1 6% 1 4% 2 5% Narrow the focus of my organization's work

0 0% 0 0% 0 0%


25

Appendix Table 8

What tangible outcomes has your organization achieved as a result of your grant(s) from the Foundation?



Total (n=42)

n % n % n %

Created new professional relationships 12 67% 17 71% 29 69% Broadened our understanding of the health care system

12 67% 16 67% 28 67%

Increased our visibility in the field 12 67% 14 58% 26 62% Project activities continued after funding 9 50% 12 50% 21 50% Publication of project results (e.g., in an academic journal)

12 67% 6 25% 18 43%

Facilitated obtaining new funding 8 44% 8 33% 16 38% Replication of our work by other organizations

6 33% 4 17% 10 24%

Media coverage of our work 5 28% 4 17% 9 21% Other 0 0% 3 13% 3 7%


Appendix Table 9

FORMER GRANTEES: Has the grant(s) from the Foundation influenced your organization's work since 2015?

n % Yes 15 83% No 3 17%

26

Appendix Table 10

What tangible outcomes did you achieve, as an individual, as a result of your grant(s) from the Foundation?

Former Grantees


(n=24) Total (n=42)

n % n % n %

Created new professional relationships 15 83% 20 83% 35 83% Increased my visibility in my field 12 67% 17 71% 29 69% Broadened my understanding of the health care system

12 67% 15 63% 27 64%

Prompted invitations to speak about my work at a conference or convening

11 61% 14 58% 25 60%

Publication of project results (e.g., in an academic journal)

11 61% 5 21% 16 38%

Positively redirected my career 8 44% 8 33% 16 38% Other 2 11% 1 4% 3 7%

Negatively redirected my career 0 0% 0 0% 0 0% Totals do not add up to 100% because grantees were permitted to choose more than one response.

Appendix Table 11


n %

Yes 17 70.8 No 7 29.2

27

Appendix Table 12

CURRENT GRANTEES: LPFCH Impacts on CSHCN Strongly

Agree/Agree Strongly Disagree/ Disagree

Don’t Know

n % n % n %

The Foundation has had an impact on public awareness of issues related to the system of care for CSHCN. (n = 23)

22 96% 0 0% 1 4%

OPEN ENDED COMMENTS LPFCH is one of the few, if only, Foundations that invests in this area. They are critical to this work at the

national and state levels. – Current Grantee

Packard is the only Foundation that is guiding this direction. – Current Grantee

The Foundation is the go-to-place for agenda setting and current literature. – Current Grantee The Foundation staff understands the system of care for CSHCN. (n = 23)

23 100% 0 0% 0 0%

The Foundation's work has enhanced the body of knowledge about the system of care for CSHCN. (n = 23)

23 100% 0 0% 0 0%

The work of the Foundation is likely to influence public policy around the system of care for CSHCN. (n = 22)

22 100% 0 0% 0 0%

The work of the Foundation is likely to influence programs serving CSHCN. (n = 22)

21 95% 0 0% 1 5%

OPEN ENDED COMMENTS The [California State Agency] is a closed system when it comes to ideas, suggestions, approaches, models, or dare I say, evidence. This controlling agency has its own agenda and don't work well with stakeholders or those receiving services. They are a public policy nightmare. – Current Grantee

The Foundation staff understands the social factors that affect the care of CSHCN. (n = 23)

22 96% 0 0% 1 4%

The Foundation staff understands the economic factors that affect the care of CSHCN. (n = 23)

22 96% 0 0% 1 4%

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Appendix III: Tables of All Findings Tables below are numbered to correspond to the question number in the original survey instruments (see: Appendix IV: Survey Instruments).

Current Grantees

Q1 What is your organization’s primary role in the system of care for CSHCN? (n = 25)

n %

Academic institution including children’s hospital 12 48.0

Advocacy organization 6 24.0 Public agency 1 4.0 Nonprofit organization 2 8.0 Policy research organization 3 12.0 Professional membership organization 1 4.0 Other 0 0.0

Q2 What is your primary role in your organization as it pertains to your work on the grant(s) from the Foundation? (n = 25)

n %

Academic researcher 11 44.0 Non-academic researcher 4 16.0 Private consultant 1 4.0 Advocate 2 8.0 Public agency staff member 0 0.0 Nonprofit staff member 6 24.0 Other 1 4.0

“Other” Responses • Project Director of Advocacy Organization

Q3 How long have you been working on issues related to CSHCN? (n = 25) n %

1-3 years 3 12.0 4-6 years 8 32.0 7-9 years 2 8.0 10+ years 12 48.0

29

Q4 Which of the following topic areas best describe the primary focus of your grant(s) from the Foundation? (n = 25)

n %

Care coordination and medical home 2 8.0 Coverage, benefits, and access 1 4.0 Evaluating children’s health care 1 4.0 Family-engagement 3 12.0 Policy and policy advocacy 8 32.0 Systems, models and best practices 10 40.0

Q5 What is the geographical focus of your organization's grant(s) from the Foundation? (n = 25)

n %

National 8 32.0 California 16 64.0 Other 1 4.0

“Other” Responses • County

Q7 What is the total amount of funding you have received from the Foundation? If you have received more than one grant from the Foundation, please sum the funding received. (n = 25)

n %

Less than $10,000 2 8.0 $10,000 to $50,000 4 16.0 $50,001 to $100,000 6 24.0 $100,001 to $200,000 5 20.0 Greater than $200,000 8 32.0

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Q8 What effects did the grant(s) from the Foundation have on your organization's work? (n = 24)

n %

Establish new programs 9 37.5 Maintain existing programs 4 16.7 Expand existing program 12 50.0 Shift the focus of my organization's work 7 29.2 Narrow the focus of my organization's work 0 0 No effect 1 4.2 Other 4 16.7

“Other” Responses • Enhanced collaboration with an organization, mutually agreed upon advocacy priorities. • Expand the audience of purchasers aware of health care transition. • Increased our staff's understanding of care coordination for CSHCN. • I am not actually a grantee of the Foundation. I am an independent health policy consultant

who the Foundation has hired from time to time to support their advocacy work and to write policy/advocacy related reports. So, this question is not applicable to my situation/relationship to the Foundation.


OPEN ENDED COMMENTS

• Funding from the Foundation enabled us to establish a nurse-led learning collaborative. • This funding enabled us to reach a group of key stakeholders who are major players in health care,

but have not focused much attention on children and youth with special health care needs or transition. While our organization was quite familiar with fee for service reimbursement, this funding allowed us to expand our knowledge of value-based payment innovations.

• The grant allowed me, as the CCS administrator, to improve the process, member relationships, and workforce planning for [County] CCS program. Additionally, the grant improved the relationship with our local university for moving forward graduate student internship programs, student learning through community service, and providing employment post-graduation. One in four interns funded by the grant now work in social services organizations where the internship was identified as a contributing factor in the selection process. Two interns have moved on to doctoral studies.

• This grant was instrumental in focusing the institution, as well as the MediCal Managed Care agency on the problem of care coordination of children with CHSCN.

31

Q9 What is the primary effect the grant(s) from the Foundation had on your organization's work? (n = 23)

n %

Establish new program 5 21.7 Maintain existing program 2 8.7 Expand existing program 7 30.4 Shift the focus of my organizations work 4 17.4 Narrow the focus of my organization's work 0 0 No effect 1 4.3 Other 4 17.4

“Other” Responses • Enhanced collaboration. • Our study built upon existing knowledge from other populations, and learning how to translate

findings to CSHCN expanded our knowledge. • Allowed me to hire staff to complete the project and protect my own time to work on it. • I am not actually a grantee of the Foundation. I am an independent health policy consultant


OPEN ENDED COMMENTS

• The research underpinned diabetes and pharmacy education classes for transitioning CCS members.

• We are actively working with our MediCal Managed Care agency, our institution, and our community resources to expand access and develop a medical home model for CHSCN.

• This funding enabled us to reach a group of key stakeholders who are major players in health care, but have not focused much attention on children and youth with special health care needs or transition. While our organization was quite familiar with fee for service reimbursement, this funding allowed us to expand our knowledge of value-based payment innovations.

32

Q10 What tangible outcomes has your organization achieved as a result of your grant(s) from the Foundation? (n = 24)

n %

Broadened our understanding of the health care system 16 66.7 Created new professional relationships 17 70.8 Increased our visibility in the field 14 58.3 Facilitated obtaining new funding 8 33.3 Publication of project results (e.g., in an academic journal) 6 25.0 Media coverage of our work 4 16.7 Project activities continued after funding 12 50.0 Replication of our work by other organizations 4 16.7 Other 3 12.5

“Other” Responses • Helped others understand policy issues. • Adaptation and use of our work in state health policy. • I am not actually a grantee of the Foundation. I am an independent health policy consultant



OPEN ENDED COMMENTS

• Our work has been accepted for dissemination at two healthcare conferences, but the project is in progress, so we have not yet published the findings in a peer-reviewed journal.

• Of most significance, the grant facilitated the cooperation (and co-planning) from [Hospital] and [County] Health Systems (provider & Medi-Cal Managed Care Plan) in all the interventions designed and tested to improve the readiness for transition of [County] CCS adolescents.

33

Q11 What is the primary tangible outcome your organization has achieved as a result of your grant(s) from the Foundation? (n = 23)

n %

Broadened our understanding of the health care system 4 17.4 Created new professional relationships 8 34.8 Increased our visibility in the field 0 0 Facilitated obtaining new funding 1 4.3 Publication of project results (e.g., in an academic journal) 2 8.7 Media coverage of our work 0 0 Project activities continued after funding 4 17.4 Replication of our work by other organizations 1 4.3 Other 3 13.0

“Other” Responses • Encouraged more parent participation. • Adaptation and use of our work to improve state health policy. • I am not actually a grantee of the Foundation. I am an independent health policy consultant


34

Q12 Has the grant(s) from the Foundation influenced your organization's subsequent work? (n = 24)

n %

Yes 19 79.2 No 5 20.8

OPEN ENDED COMMENTS

• Influenced our focus on family engagement and our ability to continue our work in that area. • Increased our clinical footprint in the models we developed • I am not actually a grantee of the Foundation. I am an independent health policy consultant who

the Foundation has hired from time to time to support their advocacy work and to write policy/advocacy related reports. So, some of the questions, including this question, are not applicable to my situation/relationship to the Foundation.

• Yes, we have incorporated the grant work across our organization's projects, and promoted with key partners as a priority. We continue to use the products and information gathered through prior grants to inform our current work and build upon the next steps identified.

• We continued and expanded the work we did on mental health as a result of this project. • Participating in the 5Cs has strengthened my organization's commitment to utilize a collaborative

effort to identify and address system issues. The issues selected to address in Phase III and Phase IV were not only discussed at the coalition meetings but also at the leadership level of my organization.

• We are continuing to expand our program and this would not be possible with the grants support in bridging us and allowing us to move in a new direction of understanding the impact of our program on the medical team as well as the families.

• The Foundation's investment has helped to expand our portfolio of work on CYSHCN. With each grant from the Foundation, we have sought to leverage the investments to ensure maximum impact on the work and impact in changes to state health policy.

• We are still in phase 1 of this grant and are just now beginning to think about next steps for this work.

• Enhanced communication and collaboration with an organization with shared mission and priorities

• Provided enhanced perspective about new professional roles and re-organization for improved care.

• We have submitted a new communication and dissemination grant to your Foundation to maximize the investment made by the Foundation. We were recently invited by the [omitted] Foundation to submit a VBP pilot, which we just did with the [omitted] Health Care System, a Medicaid specialty care managed care organization. We are also working with 3 of our integrated care system partners helping them to work with regional Foundations in support of VBP opportunities.

• At least until I retired from public service in August 2018: New programs were established to implement a transition registry, offer CCS adolescents care notebooks, pharmacy classes, and

35

diabetes education, assistance for parents with obtaining conservatorship-most importantly bring the challenges of transition to the members and families at a dedicated venue.

• We are regarded as an expert in this area as a result of the work we published through the support of the Foundation. We have redirected our focus and resources to continue working in this area.

• We mostly do contract work and not researcher-initiated projects, so we're sometimes limited in how we can build from earlier projects.

• The grant from the Foundation allowed us to understand the problem, as well as gaps in care for CHSCN. It facilitated the introduction of different partners and resources within the community. It facilitated development of a program plan that is scalable, and translocatable. This work, towards implementation and model demonstration, has continued since completion of the grant.

• The development of this survey was used in funding future projects and will be used in evaluation of home care at our institution.

36

Q13 What tangible outcomes did you achieve, as an individual, as a result of your grant(s) from the Foundation? (n = 24)

n %

Broadened my understanding of the health care system 15 62.5 Created new professional relationships 20 83.3 Increased my visibility in my field 17 70.8 Publication of project results (e.g., in an academic journal) 5 20.8

Prompted invitations to speak about my work at a conference of convening 14 58.3

Positively redirected my career 8 33.3 Negatively redirected my career 0 0 Other 1 4.2

“Other” Responses • Positively influenced my career and work on CYSHCN.


Q14 What is the primary tangible outcome you achieved, as an individual, as a result of your grant(s) from the Foundation? (n = 23)

n %

Broadened my understanding of the healthcare system 4 17.4 Created new professional relationships 9 39.1 Increased my visibility in my field 3 13.0 Publication of project results (e.g., in an academic journal) 2 8.7

Prompted invitations to speak about my work at a conference or convening 2 8.7

Positively redirected my career 2 8.7 Negatively redirected my career 0 0 Other 1 4.3

“Other” Responses • Positively influenced my career and work on CYSHCN.

OPEN ENDED COMMENTS

• Current dissertation is a re-analysis of the grant research project. Intend to publish the grant research when the dissertation is complete.

• Still only halfway through the project, so this is what I would say so far, given creation of an advisory panel for the project.

37

Q15 Has your grant(s) from the Foundation had an effect on the system of care for CSHCN? (n = 24)

n %

Yes 17 70.8 No 7 29.2

OPEN ENDED COMMENTS

• Not yet, as this grant has recently begun. • Empowered parents to be more involved in CCS Family Advisory Councils. • Increased use of our model of care. • Family members are actively engaged in systems of care for CSHCN; meaningful participation on

boards, task forces, decision making committees, legislative advocacy regarding CSHCN • Hopefully the reports I wrote contributed to efforts to expand family participation in policy decision

making and contributed to supporting advocacy regarding access to durable medical equipment. • Broadened the scope and understanding of CCS enrollee use-of-care patterns, health coaching

(non-MD, non-RN), and telehealth options for self-management and transition care. • We've been able to see great uptake in our National Standards project among partners in state

systems of care - nearly all state Title V programs use the Standards as a framework in their block grant programming.

• It has raised awareness in the health policy field and promoted recommendations to improve the SOC to CSHCN.

• Improvements were made to at CCS to streamline access to medical supplies. • It directly shakes up the way children with complex special health care needs receive care in a

model that increases support and addresses social determinants of health. • Through our grant, we have identified the impact of the work on positive changes to state health

policy and systems of care for CYSHCN. • Although still in progress, we believe that the changes happening locally at the collaborative

member hospitals are impacting system-level care for CSHCN. • Enhanced family engagement; new systems of care coordination. • But it will, if payers and systems implement! • The [County] CCS members had a stake in the research process. Member satisfaction surveys

show improvement in the level of satisfaction with the CCS services. • Our work has increased public awareness of certain complex issues involving care for CSHCN. • I don't know yet if our study has had an effect, but we hope that our publication helped inform

Medicaid and managed care leaders on how to develop effective care coordination programs for CSHCN

• This grant will enable the development of a medical home model for CHSCN, with extensive support for care coordination.

• Grant still in process

38

Q16 The Foundation has had an impact on public awareness of issues related to the system of care for CSHCN. (n = 23)

n %

Strongly Agree 19 82.6 Agree 3 13.0 Disagree 0 0 Strongly Disagree 0 0 Don't Know 1 4.3

OPEN ENDED COMMENTS

• LPFCH is one of the few, if only, Foundations that invests in this area. They are critical to this work at the national and state levels.

• Packard is the only Foundation that is guiding this direction. • The Foundation is the go-to-place for agenda setting and current literature.

Q17 The Foundation staff understands the system of care for CSHCN. (n = 23)

n %

Strongly Agree 21 91.3 Agree 2 8.7 Disagree 0 0 Strongly Disagree 0 0 Don't Know 0 0

Q18 The Foundation's work has enhanced the body of knowledge about the system of care for CSHCN. (n = 23)

n %


Q19 The work of the Foundation is likely to influence public policy around the system of care for CSHCN. (n = 22)

n %


39

Q20 The work of the Foundation is likely to influence programs serving CSHCN. (n = 22)

n %


OPEN ENDED COMMENTS

• The [California State Agency] is a closed system when it comes to ideas, suggestions, approaches, models, or dare I say, evidence. This controlling agency has its own agenda and don't work well with stakeholders or those receiving services. They are a public policy nightmare.

Q21 The Foundation staff understands the social factors that affect the care of CSHCN. (n = 23)

n %


Q22 The Foundation staff understands the economic factors that affect the care of CSHCN. (n = 23)

n %


40

Q23. Please describe activities with which the Foundation might have helped you or could help you now that would advance your work related to the care of CSHCN.

OPEN ENDED COMMENTS

• Media outreach; outreach to health care providers. • I have no advice here. Foundation staff was fully supportive/helpful in advancing the projects I did

for the Foundation. • Providing opportunities to look at national trends in agencies that have a systems focus for

CYSHCN; fostering collaboration across states; elevating policy implications and need policy changes (especially for those in government or agencies that cannot always comment on policy)

• Supporting conferences or convening where discussions about issues impacting CSHCN can happen and relationships can be expanded between advocates, providers and families/consumers.

• They have done a great job and we are at the cusp of a large Foundation grant shortly because of this bridge funding.

• We have had a close partnership with the Foundation for several years. Their investments in our work have made a significant impact on our ability to keep issues specific to CYSHCN at the fore of state health policymakers agendas.

• The Foundation has been a phenomenal support for building cross-institutional partnerships and interprofessional collaboration. I have appreciated the connections made with other pediatric clinicians as a result of my work with the Foundation. I would love to have the Foundation continue to facilitate conversations and work for CSHCN.

• Serve as a "thought leadership" convener in California on relevant topics that would impact or advance care for children with complex health care needs. Commission a study on pediatric workforce in California-what are the current and future gaps as it relates to physician workforce for children with special health care needs.

• Re-design of our system for care coordination to centralize services that are agnostic to diagnosis or organ system.

• We have just this month submitted a new application to the Foundation. • The Foundation's staff have technical expertise, influence, and resources that could have helped

me convince my department director to complete the research up to the end of the grant period. Site visits by the Foundation would have helped.

• The Foundation has been very supportive in review drafts and assisting with the analysis of our work.

• We had great support on our study, and the Foundation helped to disseminate the results on their website and in their newsletter afterwards. We were really happy with the support.

• Development of CCS Care Center status for care coordination of children with CHSCN is an initiative that the Foundation has taken on, and that would bring real value to those trying to establish such centers.

• [Staff] has helped facilitate connections that enhanced the advisory board for our project which has enhanced its quality.

• I look forward to using the Foundation's resources to disseminate the work that it has funded.

41

Q24. Please suggest topics or issues related to improving the system of care for children with special health care needs that the Foundation should address in the future.

OPEN ENDED COMMENTS

• More advocacy and linkages between care for CYSHCN and the broader system of care for kids. Linkages between health and education of CYSHCN.

• Connection from outpatient to inpatient care. • Discharge planning. • I wish the Foundation would fund more aggressive direct advocacy. I think the Foundation would

find they could get a lot of bang for their buck if they prioritized funding direct advocacy • Digital health and AI: Promises and Hype for Advancing CSHCN Care • Return on investment or cost-effectiveness of systems improvements for CYSHCN (not just

"dollars" but societal and quality of life returns). • Our current interest is in the area of behavioral health. Generally speaking, we would like to focus

on Medi-Cal rights and EPSDT. • They are addressing everything that is pertinent and are at the forefront of improving systems and

children's health. • Please consider expanding investments in CYSHCN to include work on children's behavioral health

and also children and youth in foster care. • Home-based palliative care services - expansion to children across CA and the nation. • Impact of socioeconomic status on family for CSHCN. • Transition to adult care . • Behavioral health for CYSHCN. • Genomics. • Working to define and implement caring teams for CSHCN; New and innovative payment models

for CSHCN such as payment bundles and targeted case management. • I know the Foundation supports work on transition in California. I'd love to talk further with you

about these efforts, as I'm aware that the state is now forming a state advisory group on transition.

• Economic eval. • The outmigration for sub-specialty care will never stop. Children's hospitals are established using a

regional catchment model. However, some services can be performed in the member's local area and passed onto the sub-specialist-can't we all agree which ones? For some CCS members, the travel for sub-specialty care is economically and socially challenging. Would love to take this on.

• The Foundation may wish to consider targeting issues related to children and youth in the foster care system.

• The frequency/need by families to sue to get services that should be covered by law (e.g. EPSDT, etc.). How often is this happening? Which states are the biggest offenders? What's the big picture there that the dots need to be connected on?

42

Former Grantees

Q1 What is your organization’s primary role in the system of care for CSHCN? (n = 20)

n %

Academic institution including children’s hospital 16 80.0 Advocacy organization 1 5.0 Public agency 1 5.0 Nonprofit organization 0 0 Policy research organization (non-academic) 1 5.0 Professional membership organization 0 0 Other 1 5.0

“Other” Responses • County care coordination project for CSHCN and their families and providers

Q2 What is your primary role in your organization as it pertains to your work on the grant(s) from the Foundation? (n = 20)

n %

Academic researcher 15 75.0 Non-academic researcher 0 0 Private consultant 1 5.0 Advocate 0 0 Public agency staff member 2 10.0 Nonprofit staff member 1 5.0 Other 1 5.0

“Other” Responses • Care coordination trainer for other counties

Q3 How long have you been working on issues related to CSHCN? (n = 20) n %

Less than 4 years 0 0 4-6 years 5 25.0 7-9 years 2 10.0 10+ years 13 65.0

43

Q4 Which of the following topic areas best describe the primary focus of your grant(s) from the Foundation? (n = 20)

n %

Care coordination and medical home 6 30.0 Coverage, benefits, and access 0 0 Evaluating children’s health care 2 10.0 Family-engagement 1 5.0 Policy and policy advocacy 1 5.0 Systems, models and best practices 10 50.0

Q5 What is the geographical focus of your organization's grant(s) from the Foundation? (n = 20)

n %

National 6 30.0 California 12 60.0 Other 2 10.0

“Other” Responses • San Jose • County system level

Q6 What is the total amount of funding you have received from the Foundation? If you have received more than one grant from the Foundation, please sum the funding received. (n = 20)

n %

Less than $10,000 2 10.0 $10,000 to $50,000 9 45.0 $50,001 to $100,000 2 10.0 $100,001 to $200,000 2 10.0 Greater than $200,000 5 25.0

44

Q7 What effects did the grant(s) from the Foundation have on your organization's work? (n = 18)

n %

Establish new programs 7 38.9 Maintain existing programs 1 5.6 Expand existing program 7 38.9 Shift the focus of my organization's work 6 33.3 Narrow the focus of my organization's work 0 0 No effect 1 5.6 Other 4 22.2

“Other” Responses • Inform value-based care. • Expand focus of our work. • Provided research data. • Support better-informed and updated education of policymakers to change/improve CA policies

for CSHCN. Totals do not add up to 100% because grantees were permitted to choose more than one response.

OPEN ENDED COMMENTS

• We have been able to add School Nurse FTE and experience and data from our grant has increased the efficiencies in our department. We are better at providing nursing support to students with chronic health conditions.

• Pilot program only lasted duration of the research study. • Substantial impact across the US. Global adoption commencing. • Creating a mobile health application for CYSHN. • Our county collaborative was able to train three other counties in care coordination for CSHCN. • Under the grant we recommended a model, at my organization we then had the chance to

develop, test and evaluate the model. • The grant also led to increased focus within our organization on better understanding what

pediatricians (primary care and subspecialty) require in order to improve the system of care for children special health care needs. Because of the grant, this topic was on our agenda for every board meeting for several years and has become an ongoing priority for us.

45

Q8 What is the primary effect the grant(s) from the Foundation had on your organization's work? (n = 18)

n %

Establish new program 4 22.2 Maintain existing program 1 5.6 Expand existing program 7 38.9 Shift the focus of my organizations work 1 5.6 Narrow the focus of my organization's work 0 0 No effect 1 5.6 Other 4 22.2

“Other” Responses • Expand focus of our work. • Generated publications and new hypotheses. • Support better-informed and updated education of policymakers to change/improve CA policies

for CSHCN. • Don't know.

OPEN ENDED COMMENTS

• Pilot program only lasted duration of the research study. • Foundational to delivering high value care to CYSHCN. • We participate in the 5Cs statewide collaborative with many more counties than in 2012. • Under the grant we recommended a model, at my organization we then had the chance to

develop, test and evaluate the model. • Based on research the grant funded, we were able to lobby and obtain funding to create a complex

care program at [University].

46

Q9 What tangible outcomes has your organization achieved as a result of your grant(s) from the Foundation? (n = 18)

n %

Broadened our understanding of the health care system 12 66.7 Created new professional relationships 12 66.7 Increased our visibility in the field 12 66.7 Facilitated obtaining new funding 8 44.4 Publication of project results (e.g., in an academic journal) 12 66.7 Media coverage of our work 5 27.8 Project activities continued after funding 9 50.0 Replication of our work by other organizations 6 33.3 Other 0 0


OPEN ENDED COMMENTS

• Created opportunities to work the American Academy of Pediatrics on medical care home, care coordination project, and enhancing family engagement.

• We did numerous presentations about the results of our projects at the state and national level. I assume some replication occurred. Using lessons learned from our project we've expanded our collaborations with community agencies. Most notably a collaboration with the [omitted] Center supporting our homeless population, including securing a medical home for families. We are also in the process of opening a new School Health Clinic at our district office with one of our partners in the grant.

• Led to multiple consultation requests of me by other organizations.

47

Q10 What is the primary tangible outcome your organization has achieved as a result of your grant(s) from the Foundation? (n = 18)

n %

Broadened our understanding of the health care system 4 22.2 Created new professional relationships 3 16.7 Increased our visibility in the field 1 5.6 Facilitated obtaining new funding 2 11.1 Publication of project results (e.g., in an academic journal) 5 27.8 Media coverage of our work 0 0 Project activities continued after funding 1 5.6 Replication of our work by other organizations 2 11.1 Other 0 0

OPEN ENDED COMMENTS

• We now have leveraged additional funding for several years that is helping us be the primary facilitator of [County] becoming a Trauma-Informed County System of Care for all children and families.

• Two publications, one in JDBH and the other in JPN.

48

Q11 Has the grant(s) from the Foundation influenced your organization's work since 2015? (n = 18)

n %

Yes 15 83.3 No 3 16.7

OPEN ENDED COMMENTS

• Our health data tracking system and standardization was improved. We are opening a new school health clinic with our grant partner. We have expanded our community collaborations to better support students.

• Aligned with national efforts in improving Triple Aim, so our work is being more broadly implemented.

• Doing more research on CSHCN. • Provided knowledge that led to future research projects and funding to continue working to

improve systems of care for CSHCN. • A care coordination program which ran from 2015-2018. • Shifted the focus of our work to empowering and educating families with systems-related tools for

care coordination. • Mod [sic] focused. • During the grant period, discussion of California pediatricians' knowledge and attitudes towards

care for general special of care needs became a routine part of all our meetings as we reported on the grant. This has continued past the grant period, as we have incorporated the products of the grant (policy briefs) into our advocacy education of residence and our legislative days in California's capitol. In this manner, the effects of the grant project have been structural, long-term and far-reaching for us as an organization.

49

Q12 What tangible outcomes did you achieve, as an individual, as a result of your grant(s) from the Foundation? (n = 18)

n %

Broadened my understanding of the health care system 12 66.7 Created new professional relationships 15 83.3 Increased my visibility in my field 12 66.7 Publication of project results (e.g., in an academic journal) 11 61.1 Prompted invitations to speak about my work at a conference of convening 11 61.1 Positively redirected my career 8 44.4 Negatively redirected my career 0 0 Other 2 11.1

“Other” Responses • Ability to promote quality measures for CYSHCN in multiple state forums and nationally. • Provided me with a sense of meaning in improving my organizations advocacy on behalf of

special health care needs and their families.


OPEN ENDED COMMENTS

• I was asked to speak at several national level conferences, and conduct workshops on care coordination in schools for CYSHCN.

50

Q13 What is the primary tangible outcome you achieved, as an individual, as a result of your grant(s) from the Foundation? (n = 18)

n %

Broadened my understanding of the health care system 3 16.7 Created new professional relationships 5 27.8 Increased my visibility in my field 2 11.1 Publication of project results (e.g., in an academic journal) 2 11.1

Prompted invitations to speak about my work at a conference of convening 2 11.1 Positively redirected my career 3 16.7 Negatively redirected my career 0 0 Other 1 5.6

“Other” Responses • Because the project provided data and insight into pediatrician’s knowledge and attitudes

towards caring for children special health care needs and clarified what they require to support their role. It strengthened my ability to lead my organization in advocacy for children with special health care needs and their family.


51

Appendix IV: Survey Instruments

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lucile packard foundation for children’s health · 2019. 12. 19. · the lucile packard...

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