Patient-Centered Innovation: Involving Patients in Open Social Innovation

Involving patients in the process of innovating health-care delivery is associated with patient satisfaction, quality improvement, and other positive outcomes.1–3 Consequently, advocates urge health systems to increase a meaningful involvement of patients in system redesign and health care delivery innovation work.4,5 Health-care delivery innovation refers to developing a novel and useful set of behaviors, routines, and ways of working that improve care quality, equity, efficiency, and patient experience.6

Patient and Family Advisory Councils (PFACs) are a common strategy employed by hospitals to solicit input from patients.7 Through PFACs, patients can contribute to patient safety or quality improvement efforts, such as creating patient educational materials, developing outreach strategies, and offering suggestions for improvement.8,9 However, PFACs’ role in stimulating innovation is unclear; patients typically passively engage in PFACs as informants, giving specific input when solicited.

Open social innovation (OSI) presents a fitting lens to examine and advance patient participation in health care delivery innovation. OSI offers a participatory, collective approach to innovation, in which diverse groups of participants collaboratively generate ideas and scale solutions on complex social challenges.10–12 OSI can take forms of innovation contests, hackathons, and other crowdsourcing mechanisms that rely on participatory architecture.10,12–14 The central assumptions of OSI are that ideas or potential solutions are unevenly distributed among stakeholders and that interactions among these stakeholders are needed for ideas to become impactful solutions.12,14

This budding body of research has not examined using OSI to engage patients in innovation. With patients, OSI has the potential to create partnerships among patients, clinicians, administrators, and others to solve complex and difficult problems faced by health systems.15 OSI can orchestrate the involvement of patients and other stakeholders, as it has shown to do with frontline staff.13,16 To explore the use of OSI with patients, we organized an innovation contest that invited all members of PFACs at Massachusetts General Hospital (MGH).

HYPOTHESES

Despite the potential of OSI, it is not clear that setting up the OSI structure and process alone will successfully engage patients to participate in innovation; not all patients may want or feel that they should participate. Patient engagement in innovation occurs in a spectrum,1,2,17–19 illustrating the varying levels of involvement and influence that patients decide to exercise. Prior research has shown that patients who successfully influenced health care redesign and innovation positioned themselves as proactive and legitimate partners and framed their relationships with health care professionals as equal and collaborative.20 For successful implementation of OSI, it is important for patients to perceive themselves as partners rather than recipients or informants. Thus, we hypothesize:

Hypothesis 1. Patients who express a preference for involvement in innovating healthcare delivery are more likely to participate in OSI than those who do not.

Hypothesis 2. Patients who believe that patients play a key role in innovating healthcare delivery are more likely to participate in OSI than those who do not.

To participate in innovation, one must speak up with ideas and suggestions. Such speaking up is inherently interpersonally risky, as it challenges the status quo and identifies improvement needs.21 A large body of literature on employee voice has posited that employees engage in “voice calculus” before speaking up as they determine whether speaking up will be efficacious, or bring about the desired outcome, and whether it is safe to speak up, before deciding to speak up.22 Patients, who lack clinical expertize and sit in the lowest rung of professional and organizational hierarchies,23 are also likely to engage in such voice calculus as employees do. Thus, we hypothesize:

Hypothesis 3. Patients who perceive efficacy in speaking up are more likely to participate in OSI than those who do not.

Hypothesis 4. Patients who perceive safety in speaking up are more likely to participate in OSI than those who do not.

METHODS Study Context and Intervention

We implemented an innovation contest with 8 MGH PFACs (organized by disease center and location, eg, Cancer Center PFAC, Emergency Department PFAC, Charlestown Health Center PFAC) from July to December in 2022. The hospital’s innovation centers, Healthcare Transformation Lab, and Center for Innovations in Care Delivery, partnered with the Patient Experience Team to organize the contest. The MGH Institutional Review Board approved this study.

The contest began with a 4-week idea submission phase, during which all PFAC members were asked to identify a pain point and propose a solution. Next was a 2-week phase during which participants could vote for the ideas they would like to see implemented. Top-voted ideas were invited to submit detailed proposals that were scored by relevant stakeholders and departments to assess feasibility and impact. Patients of the highest scored proposals were invited to participate in implementation.

Measures and Data Sources

Participation in OSI was measured using 2 binary variables, consistent with prior research on innovation contest participation:24,25 participation in (1) idea submission and (2) voting (1=participated, 0=did not participate). A survey administered 1 month before the contest measured patients’ preference for involvement in health care delivery innovation, beliefs about patient leadership in improvement, perceived efficacy and safety of speaking up with ideas and suggestions to improve care delivery processes and outcomes. More detail on these measures and the control variables is on Supplemental Digital Content 1, https://links.lww.com/MLR/C822.

Analysis

We summarized the descriptive statistics for sample characteristics by contest participation and calculated means and SDs of the survey items. We used logistic regression models with robust SEs for testing hypotheses. A P-value of <0.05 was considered statistically significant. Stata 18 (StataCorp LLC, College Station, TX) was used for all analyses.

RESULTS

Twenty patients and family members (18%) submitted 27 ideas. Thirty (27%) voted on at least 1 idea and every idea received at least 1 vote. The study sample comprised individuals who completed the survey (n=60), representing 55% of PFAC members. Table 1 shows participant characteristics. Forty percent reported that their employment was related to health care. Sixty-five percent had been a patient or a family member or friend of a patient at the hospital for more than 10 years. Most reported their race/ethnicity as White (85%). Those included in our study sample were slightly more White but generally representative of the hospital’s overall population.26 Slightly more than half (52%) reported having no physical or neurological limitations.

TABLE 1 - Sample Characteristics All N=60 N (%) Ideation N=16 N (%) Voting N=24 N (%) Current or former employment related to health care 24 (40) 5 (31) 5 (21) Tenure as a patient or family/friend of a patient at hospital  <6 mo 2 (3) 1 (6) 1 (4)  >6 mo, <1 y 1 (2) 1 (6) 1 (4)  1–2 y 0 (0) 0 (0) 0 (0)  3–5 y 8 (13) 2 (13) 3 (13)  6–10 y 10 (17) 1 (6) 2 (8)  >10 y 39 (65) 11 (69) 17 (71) Race/ethnicity*  Asian or Pacific Islander 5 (8) 1 (6) 1 (4)  Black or African American 3 (5) 1 (6) 2 (8)  Hispanic or Latino 1 (2) 0 (0) 0 (0)  Native American or Alaskan Native 2 (3) 1 (6) 1 (4)  White or Caucasian 51 (85) 14 (88) 21 (88) Physical/neuro conditions  Physical limitations (eg, related to mobility) 13 (22) 4 (25) 8 (33)  Hearing/visual limitations 9 (15) 4 (25) 7 (29)  Neurodiversity (eg, ADHD/ADD, autism) 13 (22) 4 (25) 7 (29)  Other 14 (23) 5 (31) 7 (29)  None 31 (52) 7 (44) 10 (42) PFAC focus/location  General 18 (30) 7 (44) 11 (46)  General pediatrics 10 (17) 3 (19) 4 (17)  Oncology 7 (12) 0 (0) 0 (0)  Heart 7 (12) 3 (19) 5 (21)  Charlestown 6 (10) 0 (0) 1 (4)  Dementia 6 (10) 1 (6) 1 (4)  Emergency department 3 (5) 2 (12) 2 (8)  Pediatric oncology 3 (5) 0 (0) 0 (0)

*Respondents could select more than 1 option for their race/ethnicity.

ADD indicates attention deficit disorder; PFAC, Patient and Family Advisory Council.

Table 2 shows the summary of survey results. On average, respondents preferred to be involved in innovation (mean: 3.13 on the scale of 1–4 with higher scores indicating greater preference), believed that patients’ participation and leadership were central to improvement (mean: 3.48 with higher scores indicating stronger beliefs), and perceived efficacy and safety of speaking (mean: 3.13 and 3.33 respectively, with higher scores indicating greater perception).

Percent indicating preference for most involvement or strong agreement with a given statement Item Mean* (SD) All (N=60) (%) Ideation (N=16) (%) Voted (N=24) (%) Preference for involvement in innovation 3.13 (0.62) 27 38 46 Beliefs about patient leadership in improvement 3.48 (0.72) 58 50 58 Perceived efficacy of speaking up 3.13 (0.72) 30 19 29 Perceived safety of speaking up 3.33 (0.66) 43 31 38

For the last 3 columns, we created a binary variable, where 1 indicated preference for most involvement and strong agreement with a given statement (ie, selected 4 on the 1–4 scale) and 0 indicated preference for some or no involvement and some agreement or disagreement with a given statement (ie, selected 1, 2, or 3 on the same scale).

*These items were measured on a 1–4 scale.

Table 3 shows the results of logistic regression analyses. Hypothesis 1 predicted that patients expressing a preference for involvement in innovating would be more likely to participate in OSI than those who do not. Patients’ preference for involvement was indeed associated with increased odds of participating in idea submission (OR=2.83, 95% CI=1.10–7.28, P=0.031). When examining participation in voting, results were largely similar, with larger and stronger associations (OR=3.55, 95% CI=1.09–11.59, P=0.036). Hypothesis 2 predicted that patients who believe that patients play a key part in innovating would be more likely to participate in OSI than those who do not. The association was in the expected direction but did not reach statistical significance (OR=1.01, 95% CI=0.48–2.15, P=0.974 for idea submission; OR=1.40, 95% CI=0.68–2.88, P=0.354 for voting). Hypothesis 3 predicted that patients who perceive the efficacy of speaking up would be more likely to participate in OSI than those who do not. We found marginal support for the association in the opposite direction; the perceived efficacy of speaking up was associated with decreased odds of idea submission (OR=0.45, 95% CI=0.18–1.12, P=0.085) and voting (OR=0.95, 95% CI=0.45–2.02, P=0.890). We did not find support for Hypothesis 4.

TABLE 3 - Logistic Regression Models Associating Patient Beliefs About Engaging in Innovation and Participation in Open Social Innovation Outcome variable: idea submission Outcome variable: voting OR (95% CI) OR (95% CI) (1) (2) (3) (4) (5) (1) (2) (3) (4) (5) Preference for involvement in innovation 2.83* (1.10–7.28) — — — 2.86* (1.05–7.78) 3.55* (1.09–11.59) — — — 3.70* (1.07–12.8) Beliefs about patient leadership in improvement — 1.01 (0.48–2.15) — — 1.28 (0.48–3.46) — 1.40 (0.68–2.88) — — 1.35 (0.59–3.08) Perceived efficacy of speaking up — — 0.45^ (0.18–1.12) — 0.40 (0.12–1.35) — — 0.95 (0.45–2.02) — 1.00 (0.39–2.62) Perceived safety of speaking up — — — 0.91 (0.39–2.12) 1.07 (0.32–3.56) — — — 1.12 (0.48–2.60) 0.74 (0.27–2.02)

*P<0.05.

^P<0.10.

All models controlled for whether the respondent’s current or former employment was related to health care, respondent’s tenure as a patient or a family/friend of a patient at the hospital, respondent’s race/ethnicity, whether the respondent had physical or neurological limitations, and respondent’s PFAC affiliation. We included robust standard errors. An odds ratio (OR) greater than one indicated that an increase in the level of a predictor (eg, preferred level of involvement in innovation, perceived efficacy/safety of speaking up) was associated with higher likelihoods of participating in OSI via idea submission and voting.


DISCUSSION

This study illustrates one of the first applications of innovation contests, a form of OSI, with patients. Our findings suggest that using OSI may be helpful for expanding patient engagement in innovation, particularly among those who want to get involved more. It is possible that to those patients, OSI represented the opportunity to offer input, ensure that their input receives feedback, and collaborate with various stakeholders on improving patient experience.11 The chance to vote on ideas could have also appealed to patients who want to be involved more, as this aspect of OSI gave them a say in selecting ideas to implement and the opportunity to get to know the improvement needs in the patient community.

Importantly, setting up the structure and process for OSI alone does not guarantee patients’ meaningful involvement in innovation. Contrary to our hypothesis, the perceived efficacy of speaking up was found to be negatively associated with participation. In other words, patients who sensed that speaking up with ideas did not make a difference in achieving desired changes were more likely to use the OSI platform to voice input. It is possible that patients who had voiced input in the past felt as though their input was not taken seriously or acted on adequately, or that patients who did not feel empowered to speak up in an unstructured setting found that the OSI structure introduced a roadmap for participation. For such patients, the innovation contest could have represented a transparent, structured idea evaluation and selection process,13,27 which would ensure that their ideas were considered by relevant stakeholders. To grow patients’ perception that speaking up with ideas can make a difference, continued transparent and structured communication and feedback about the ideas and the ensuing implementation of the ideas will be key.28

In line with the literature demonstrating OSI as fostering collaboration to solve complex social challenges,10,12,14 the contest in our context spurred collective action among stakeholders at various points of the innovation process. During idea and proposal submission, patients could attend virtual “office hour” sessions, which brought together patients, human-centered design experts, medical device experts, quality improvement staff, PFAC administrators, and clinicians to collectively elaborate on ideas. The process of evaluating and determining the winning ideas brought together nursing leaders, process improvement experts, and senior managers. Including diverse perspectives in selection helped selected ideas receive the critical support needed for implementation from various groups. OSI organizers and managers may find it helpful to ensure the multidisciplinary nature of OSI.

Despite increasing rhetoric to increase patient engagement in improving health systems, few systems truly involve patients as partners in generating and implementing innovations.29,30 Involving patients as partners requires a shift in the perceptions about patients’ role in innovation. Traditionally, patients are positioned as passive recipients in health care delivery.23,31,32 For participative, collective idea generation and implementation to work, patients and providers must renegotiate their identities and norms of interaction in ways that facilitate dialog, information exchange, and collaboration.

Limitations

Our study has the following limitations. Our study sample comprised patients who participated in PFACs, who may be more motivated to give their input and get involved in care delivery innovation work compared to patients who do not participate in PFACs. Future research should study how to engage larger patient groups using OSI. Our study sample was not diverse in terms of patients’ self-reported race/ethnicity. This may restrict the generalizability of our findings and does not adequately address the inequities in health-care organizations and patient-centered innovations.33 Our sample size was very small and we were unable to include more variables or study interactional effects of variables. Some nonsignificant results may also be due to the small sample size. However, the preliminary evidence generated by this study provides motivation and a roadmap for larger endeavors.

CONCLUSIONS

Patient involvement in care delivery innovation work is crucial, as we continue to shift toward building patient-centered health systems. If health systems are to be truly equitable and patient-centered, patients must be provided with opportunities to become involved and influence innovating health-care delivery. OSI offers a promising approach to bring together patients, frontline clinicians, hospital administrators, and other stakeholders to collectively innovate health care delivery. More experimentation and research are needed to understand how OSI can be leveraged to capture patients’ voice and incorporate them in care delivery innovation.

ACKNOWLEDGMENTS

The authors thank the Connell Family and the Fredman Family Foundation for the generous philanthropic support for this work. The authors thank Cindy Sprogis, Margaret Martin, Helen Scarr, Gianna Wilkins, Colin Rice, and Liza Nyeko for partnership in implementing the Ether Dome Challenge with Patients and Family Advisory Council members at Massachusetts General Hospital. The authors also thank Brian French for careful review of the survey instrument.

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