Interview with Deb Wachenheim by Barbara Lewis

Massachusetts has mandated Patient & Family Advisory Councils (PFACs) at its 83 hospitals since 2008. How did the state pass that legislation? Let’s take a look at this interesting journey.

Health Care For All Takes the Lead

Healthcare reform, which provided health insurance for almost all Massachusetts residents, had become law in the spring of 2006. Health Care For All, which had been working in Massachusetts healthcare since 1985, knew that additional healthcare issues, such as quality improvement and cost containment, would be legislated sometime after health reform was passed. The organization created a Consumer Health Quality Council in the fall of 2006 to work on improving health care quality, including advocating for legislation. The Council’s members were individuals who had difficult healthcare experiences that seriously impacted themselves or loved ones. Ahead of a new legislative session starting in January of 2007, the Consumer Health Quality Council began brainstorming ideas for legislation. Members of the Council focused on their own experiences and their friends’ and loved ones’ experiences, as well as looked at what was going on in other states.

The Council narrowed the list to six areas, one of which was PFACs. Health Care For All (HCFA) began learning about PFACs, including visiting one of Dana-Farber Cancer Institute’s PFACs, which was one of the first in Massachusetts.  By including the PFAC mandate in the six-part legislation, HCFA hoped to start a conversation in Massachusetts about patient and family engagement and about having PFACs at hospitals and at other healthcare providers. The six-part bill was filed by sponsors in both the House and the Senate in the Massachusetts legislature.

Finding a Champion

HCFA’s familiarity with the healthcare community, as well as with the legislators who work in healthcare, helped the organization achieve success legislatively. They reached out to Richard Moore, a long-time senator, who was a leader in healthcare and had worked with HCFA on a number of legislative initiatives. He was known for his work on healthcare quality and was seen as a leader in patient safety and quality improvement. Senator Moore was very interested in HCFA’s bill, which included the component regarding PFACs and agreed to be the lead sponsor.

To increase the chances of the bill passing by having it filed in both houses of the legislature, HCFA identified Representative Denise Provost as their champion in the House. Although Ms. Provost was a relatively new legislator, she was very happy to lead HCFA’s efforts in the House.

The two bills that were introduced in the Senate and the House were identical. Although some revisions were made later in the process, it helped to have bills in both houses that were very similar. This prevented getting the approval of one house and then attempting to figure out what changes needed to be made to get the approval of the other house.

Where’s the Data on PFACs?

Although substantial data existed with other areas of the proposed legislation, such as infection prevention, there was little compelling information regarding PFACs. Instead, HCFA cited qualitative data regarding accomplishments made at the Massachusetts’ hospitals with PFACs, including Dana-Farber Cancer Institute, Massachusetts General Hospital, Boston Children’s Hospital, Cambridge Health Alliance, Brigham and Women’s Hospital and Beth Israel Deaconess Medical Center.

HFCA cited examples of success from Massachusetts’ PFACs and researched PFACs in other states, as well. HCFA brought the patients and family members on the Consumer Health Quality Council to meetings with legislators. They told their stories and highlighted the necessity of including the patient and family voice to improve healthcare. The stories were compelling and drove home why the legislation was important.

Shepherding the Bill through the Houses

In Massachusetts, a bill is assigned to a committee. The Joint Committee on Public Health was the first committee to receive HCFA’s bill. HCFA arranged small group meetings with members of the committee. One or two Consumer Council members would meet with each committee member to tell their stories, to explain why they were involved with the Council, to assert why legislation was important and to answer any questions from members of the Joint Committee on Public Health.

When the Joint Committee on Public Health had its hearing on the bill, HFCA prepped some of the Consumer Council members to publicly testify. Those who didn’t publicly testify submitted written testimony. HCFA reached out to many partner organizations to let them know that the hearing was happening and encourage them to submit testimony if they wanted to openly support the legislation. They also worked to get supporters in the room on the day of the hearing.

Throughout this process, HCFA distributed a one page brief overview of the bill, the sponsors and the facts at the State House preceding an important vote.

As a result of all of this work, the Joint Committee on Public Health approved the bill and then moved it to the Committee on Health Care Financing. A number of months later, a large quality improvement/cost containment bill was filed by the Senate President.  This bill included a number of provisions from the Consumer Council bill, including the PFAC mandate.  The Committee on Health Care Financing held a public hearing on this bill and members of the Consumer Council again testified orally and in writing about the PFAC provisions.

What Were the Challenges?

Although there were very few challenges within the legislature, a couple of organizations publicly opposed or questioned the necessity of the PFAC mandate. The Dana-Farber Cancer Institute and the Massachusetts Hospital Association were the lone public dissenters. The Dana-Farber Cancer Institute testified at the hearing for the legislation that while PFACs were good, they did not believe PFACs should be mandated.

And then the Implementation

After the bill was passed in the summer of 2008, there were hearings on the regulations for implementing the legislation. At that time, the Massachusetts Hospital Association spoke publicly, questioning the impact of PFACs on hospitals’ efforts. The mandate falls under the Department of Public Health; however, that department is not required to do anything under the law. Although PFACs have to write an annual report, they are not required to send them to the Department of Public Health. The requirement is that the reports are available to any member of the public upon request.

Health Care For All recognized a gap and wanted to make sure that the PFAC mandate was successful — not just that every hospital had a PFAC, but that they’re actually making effective changes. They collect the annual reports from all the PFACs and post them on their website (https://www.hcfama.org/2014-hospital-pfac-reports).  HCFA, the organization that started it all, organizes conferences and webinars for Massachusetts PFACs, facilitating PFACs learning, sharing and networking with one another.

Recommendations:

• Collect stories and statistics from PFACs on their accomplishments.
• Identify organizations with which to partner, especially those that have legislative connections.
• Get all the stakeholders on board and supportive of legislation, including existing PFACs.
• Contact a local legislator, who has worked in healthcare and who can help provide connections elsewhere.
• Find someone in each House, because it’s easier down the road to reconcile any differences between the bills and then have them approved by both Houses.
• Assemble a cadre of volunteers to help with the many tasks.

Deb Wachenheim shepherded the Massachusetts legislation on behalf of Health Care For All. Barbara Lewis, a former reporter and the founder of Joan’s Family Bill of Rights, has been researching Patient & Family Advisory Councils since 2013.