Monday, June 25, 2012

Getting in on the "Action Plan"

There's an old Dutch saying my mother often shared: "No, you've got. Yes, you can get." So when I got word the Department of Health and Human Services was soliciting feedback on its Action Plan to Prevent Healthcare-Associated Infections, I channeled my eternal optimist to ask for a "yes" on stuff I believe matters a lot to patients. The letter below goes off to HHS by today's deadline (there's no Dutch saying for "getting important stuff done early"). There's also a bunch more I would say, but my college journalism professor had a saying, too: "Keep it short".

Your thoughts are welcome.

June 25, 2012

Department of Health and Human Services (HHS)
Office of Healthcare Quality
200 Independence Ave., SW., Room 711G
Washington, DC 20201
Attention: Draft National HAI AP

To whom it May Concern:

As the consumer representative since 2008 on the RI Department of Health’s Hospital-Acquired Infections (HAI) Subcommittee, an advisor to the CMS Partnership for Patients Patient-Family Engagement Network convened in May 2012, a person who lost her father to complications of an HAI (and worked to help pass two Rhode Island state laws enhancing patient safety), and an ardent supporter of patient engagement as a driver of quality improvement in health care, I am writing to provide expanded feedback on the draft National Action Plan to Prevent Healthcare-Associated Infections: Roadmap to Elimination (HAI AP).

I’m pleased that the HAI Subcommittee on which I serve has conveyed to you by separate correspondence (to which my signature is affixed) an endorsement of many of HHS’s HAI reduction initiatives, as well as areas of continuing challenge that would benefit from your office’s expedited direction and support. Areas where I feel your support and guidance are particularly needed include the following:

1) Resolve inconsistencies in the guidelines promulgated by the various federal agencies that govern or direct HAI reporting. Currently, the lack of clear mandates and guidelines leaves many if not most hospitals reporting the minimum required. Rhode Island has in fact gone beyond federally mandated reporting requirements and begun to voluntarily gather data on CDI (Clostridium difficile infections), which you are likely aware are “at their highest levels in history”, according to the CDC.[1] While RI should be commended for its pioneering stance in this regard, we on the Subcommittee continue to struggle with which data guidelines to use (we’ve spent more than a year just determining how “hospital-acquired” is defined).  Absent clear guidance, there is also concern that the resources we’re devoting to this effort will be moot once new federal directives are finally announced. These factors drag out the process, and compromise our capacity to deliver information that is meaningful and actionable to the public. The result is that most consumers remain unaware of the risks of HAI in healthcare settings, and so are unable to proactively partner in their care. This leaves nearly 300 people still dying each day in hospitals from HAIs that might have been prevented. 

2) Patient engagement is critical. In today’s complex, multitasking medical environment, human error is unavoidable. Patients and their advocates deserve care that acknowledges this truth. The increased incidence of C-diff infection, and of pan-resistant MDROs (infections resistant to all known antibiotic therapies) underscore the need for a “common mental model” of HAI prevention. The public must understand the risks, symptoms, course of disease, and behaviors s/he can undertake to mitigate the risk of contracting an HAI. (For instance, hospitalized patients might be told that to avoid C-diff infection they should never touch mouth or nose with unclean hands). Rhode Island has passed a law requiring distribution of such information to patients upon admission, or as soon after admission as possible (R.I.G.L. Chapter 2317.17). As we move toward implementation, this initiative may serve as a model for other states.

3) More resources are needed to research, prevent and combat HAIs in medical settings, reflecting the critical nature of this public health threat. I’ve become increasingly alarmed by comments at our Subcommittee meetings that new regulatory mandates divert time and attention from the patient’s bedside (“we’re spending too much time doing data entry”), and that in revenue-challenged times, infection control must fight a losing battle for resources. This concern is reflected in publications and medical blogs elsewhere in the nation. Your leadership in ensuring these resources are available is critical. “High tech” care is no substitute for “high-touch” care.

4) Take meaningful steps to synthesize the input of patients and families on patient engagement strategies. Though patient and family engagement is widely touted as a key goal of CMS and HHS to improve the quality of care, a true embracing of the patient/family perspective has yet to manifest through any federal entity. Case in point: I was among a group of patient advocates asked to participate in the kickoff meeting of the PfP Hospital Engagement Network, scheduled for late May 2012 in Washington, DC. Days before the event, we received an email that the meeting was cancelled, due to “budgetary restrictions on federal travel”. Instead, a two-hour webinar took its place, during which fifteen minutes was allotted to advocate input. Those of us listening via our computers (instead of our phones) found ourselves technically shut out of speaking up even during those fifteen minutes. Though the public relations firm handling this project has committed to “do better” (based on poor feedback from the advocate community), the event at the very least delayed the onset of any next steps that might have been taken toward helping patients. The support of HHS in getting this agenda on track (perhaps restoring funding for the gathering of PFE advocates) would, I believe, serve the public good.

History tells us that against strong lobbying interests, only public demand can fuel the engine of culture change. Many of us in the advocate community have innovative ideas on how to accomplish this. Personally, I’ve offered to help the PfP PFE network develop and deploy patient engagement strategies that utilize social media, the talents and passions of new college graduates, and a new patient-centric device that empowers the patient with tools for hand hygiene, communication and the management of care transitions. Whether it’s these or other strategies that ultimately are adopted to foster patient engagement, I’m hopeful we can move quickly, as every day that passes is a lost opportunity to save someone’s family member from avoidable medical harm.

I appreciate your consideration of this input, and would be pleased to provide further detail. Thank you for your work toward a more responsive, holistic and satisfactory health care system.


Pat Mastors
Patient Advocate, PfP PFE Network contributor, Member, Rhode Island HAI Subcommittee, Member, Consumers Union Safe Patient Project, Participant, IHI Annual Forum, President and CEO, Pear Health LLC

[1] For the report, researchers looked at data from the Emerging Infections Program, NHSN, and c diff prevention programs in Illinois, Massachusetts, and New York. Key findings include:
·             94% of all CDIs were related to various precedent and concurrent health-care exposures
·             Of these patients, 75% had CDI onset outside of a hospital.
·             Some cases occurred in patients who were exposed to multiple settings including nursing homes and hospitals.
·             Mortality from CDI increased from 3,000 deaths per year during 1999–2000 to 14,000 during 2006–2007; over 90% of these cases were in patients aged 65 or older.
·             Hospital-onset CDI are estimated to cost $5,042–$7,179 per case.
·             Much of the recent increase in the incidence and mortality of CDIs is attributed to the emergence and spread of a hypervirulent, resistant strain of C. difficile.
(Sources: The Advisory Board Daily Briefing,, March 7, 2012; Centers for Disease Control and Prevention,, March 6, 2012)

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