Empowering Health Care Consumers

Grantee Name

New York Public Interest Research Group Fund, Inc.

Funding Area

Empowering Health Care Consumers

Publication Date

June 2021

Grant Amount

$172,232

Grant Date:

July 2017- June 2019

Evidence shows that the presence of family members can have a significant positive impact on the quality and safety of care that patients receive in the hospital.

Isolating patients from their loved ones at their most vulnerable time can place them at risk for medical error (especially medication errors), emotional harm, inconsistencies in care, and lack of preparedness for transitions in care. Yet despite the evidence, families and caregivers are often still barred from the bedsides of loved ones at important times of day because of restrictive hospital visiting policies.

Having robust family presence guidelines, such as 24/7 open visitation, is one way to strengthen and leverage the important role of family and informal caregivers as partners in a patient’s health care experience. Data found that allowing 24/7 access for families across all departments in a hospital correlated with improved Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores. The New York Public Interest Research Group Fund (NYPIRG) and Institute for Patient- and Family-Centered Care (IPFCC) piloted a 24/7 visitation program in New York City hospitals to improve hospital policies on caregiver presence and visiting. Based on promising early findings, NYSHealth awarded a grant NYPIRG, in collaboration with IPFCC, to enhance and replicate the pilot at hospitals throughout New York State.

Outcomes and Lessons Learned

  • Engaged 26 hospitals statewide in the “Better Together: Partnering with Families Learning Community” learning collaborative program, which trained and coached hospitals on how to improve caregiver presence and visiting policies.
  • Eliminated barriers to family support presence and participation and improved opportunities for patients and their family caregivers or trusted support persons to be active partners in care by:
    • Facilitating regular coaching and training sessions between IPFCC staff and the learning collaborative cohort to share best practices and problem-solving techniques; and
    • Providing access to tools and resources (e.g., sample policies, profiles of exemplar hospitals, templates for websites) that participating hospitals could use and adapt.
  • Increased the ability of New York hospitals to partner with patient and family advisors in change and improvement efforts by:
    • Supporting system-wide changes with leadership support. Best practices included centralized coordination of project activities through a formal committee or department; formation of shared work teams to carry out project tasks; involvement of existing partnership councils; and collaboration with other key departments, including human resources and those responsible for the hospital’s website; and
    • Raising awareness within health systems and the public at large by regularly providing organizational self-assessments and IPFCC publications.
  • Completed a two-part survey to measure change in policy and communications of 40 hospitals. At the end of the survey period:
    • More than two-thirds (27) of the hospitals surveyed provided 12 or more hours of visiting time per day, with 17 of these hospitals now offering 24-hour open visitation for general medical/surgical units.
    • 18 of the hospital websites surveyed had clear statements encouraging the patient to designate a person or persons to serve as family caregivers/care partners; 3 hospitals had statements that strongly implied this.
    • Hospitals that participated in the learning collaborative tended to have improved policy scores and website communications more than those that did not.
    • Nearly one-fifth of the hospitals (7) had posted policies that significantly restricted patients’ access to family and other trusted people.
    • When looking at website communications, the prime source of information for the public, none of the hospitals received a perfect score.
  • Achieved a 25% increase in website navigability scores for hospitals participating in the project, outperforming hospitals that were not a part of the program. Improved navigability scores reflect better online communications about the designation or role of family caregivers/care partners; the right to choose visitors; and information that is helpful to prospective family caregivers/care partners and visitors.
  • Published an updated report, “Sick, Scared & Separated from Loved Ones,” detailing the visiting policies of 40 hospitals in New York State to see if improvements in the visitor policies and website communications of hospitals had been made. Key recommendations include:
    • If a hospital supports and encourages a patient’s family caregiver/care partner to be present at any time or to stay overnight, the policy posted on its website should state this clearly;
    • A hospital should clarify on its website policy that a patient-designated family caregiver/care partner is not merely a well-wishing visitor but part of the care team for that patient;
    • In developing or revising policies and website communications on family caregiver/care partner presence and visiting, hospitals should obtain input not only from administrators, but also from frontline staff involved in patient care and support services; patients and their family caregivers/care partners; and health consumer advocates.
  • Garnered media coverage for the report in outlets such as Crain’s New York, Journal News, Health Leaders Media, and Rochester’s Democrat and Chronicle, as well as had the report and a case study of the Northwell Health System, a learning collaborative member, featured in the Journal of Clinical Outcomes Management.
  • Hosted two webinars highlighting the learning collaborative’s successes and lessons learned and insights from the report, in which more than 150 individuals participated, including patient advocates, advisers and coaches, hospital administrative staff, nursing staff, child life specialists, government representatives, and health care associations.

Additional visitation policy improvements are possible through long-term relationship building and by supporting hospitals, particularly smaller ones whose resources may be stretched thin. The process of changing hospital culture to a different point of view is complex and takes time. Supporting the growing diversity of patient populations is another area that can benefit from attention.

Co-Funding and Additional Funds Leveraged: N/A