by Elizabeth Olson and Jacob Lippa
Globally, there is increased interest from both clinicians and administrators to understand the full potential of patient-reported outcomes. As Dr. Judith Baumhauer of the University of Rochester writes, “PROs [patient reported outcomes] are not a new concept; however, the ability to collect PRO data in real time, and the focus on sharing this information with the patient and using it in clinical decision making is the future.” And indeed, Dr. Baumhauer and her team are giving us a glimpse of what that future looks like.
In her recent New England Journal of Medicine Perspective, Dr. Baumhauer provides examples of the exciting progress that has been made in the measurement program at the University of Rochester. Founded in early 2014, the program is rooted in an advanced integrated system for collecting, visualizing, and sharing PRO data. Information for outcomes including physical functioning, pain, and depression scores has been collected from over 148,000 patients since the program’s inception.
Collection of this information is just the beginning. As anyone with experience implementing outcomes data measurement can attest, measurement alone is insufficient to change clinical practice or affect outcomes. Through her article, we learn how Rochester is using outcomes measurement to take quality improvement projects to a new level – helping clinicians understand their patients’ needs, expectations, and treatment options in a new dimension. Perhaps the most innovative aspect of the program is the use of PROs for predictive modeling, wherein preoperative PROMIS scores are used to forecast the benefits of surgical intervention (or lack thereof) for foot and ankle surgery. Similar analyses have been done for other common procedures within the department, as well, including spine surgery and total joint replacement. The potential for impact is undeniable, as ensuring appropriate use of high-cost and high-volume procedures yields cost-savings as well as improves safety for patients.
Changing clinical practice, as we have alluded to in our previous post on ICHOM Keynote Speaker Peter Tollman, is about more than just common purpose. However, what we may take away from Dr. Baumhauer’s work is that having clear use cases in mind for incorporating PROs into routine clinical care is a key element of a successful implementation program. Supporting this hypothesis are other efforts described by Dr. Baumhauer that are being made in organizations like the NHS and the University of Utah, whose purposes range from guiding clinical conversations to identifying and disseminating best practices within a hospital system.
We are excited to welcome the pioneers of these projects to share their progress, lessons and challenges at the 2017 ICHOM Conference. Dr. Baumhauer will be presenting in morning and afternoon breakout sessions. Please click here for the conference agenda and here to register.
by Elizabeth Olson and Jacob Lippa
Tessa Kowaliw is a health consumer advocate, educator, and principle consultant at One Mother to Another, a business that aims to teach consumers how to access balanced information and build support networks for women experiencing pregnancy. Tessa will be sharing her thoughts on the importance of the patient perspective in a panel at ICHOM’s 2017 Conference titled “What Does a Market Driven by Competition on Outcomes Look Like?”.
We asked Tessa a few questions about her experience in advocacy and what she is looking forward to most about this year’s conference.
What made you passionate about becoming a consumer advocate?
I joined the world of advocacy shortly after the birth of my first child in 2009. After a textbook, healthy pregnancy, I was left shaken, traumatised and ‘broken’ following an unplanned (and, as I would later learn, avoidable) Caesarean. Part of the trauma for me was the shock of an unanticipated outcome; the other was the fact that, during this surgical delivery (which was also one of the most significant moments of my life), I felt unheard, forgotten and irrelevant. I struggled for months trying to make sense of what had happened. After many hours of reading and researching, talking with clinicians and consumers, and integrating the information with my experience, I eventually realised three important things:
- That the system needs to get better at giving consumers the information they need and in their language;
- That what the system considers to be ‘good outcomes’ is sometimes at odds or only a small part of what consumers seek as ‘good outcomes’; and
- That there was lots of work to be done to effect the positive change I saw was possible in the healthcare system.
How are you involved at present in advocacy?
I work as a consumer advocate at a variety of levels, advising, speaking, writing and educating consumers, clinicians and decision makers.
As an advisor, I liaise closely with the Women’s and Children’s Health Network (Adelaide, South Australia), am a Special Purpose Director (Consumer) with Women’s Healthcare Australasia and am a co-author on ICHOM’s Pregnancy and Childbirth Standard Set. I am a regular guest speaker as part of local university midwifery programmes and also present at a variety of conferences. Following my panel appearance at the 2016 ICHOM conference in London, my video The Importance of Patient Perspective in Outcome Measurement has since been played across the Netherlands, Australia and in Rome.
I recently ran the ‘Birthing Stories’ pilot project, an Arts in Health collaboration with a local songwriter at the heart of which lies the birth stories of local mothers. This project created a range of written and spoken word, musical and visual art-based outcomes which document individual experiences. These resources will be used by the Women’s and Children’s Centre for Education and Training and the project will be adapted for use by other health services with an interest in gathering consumer voice as ‘raw data’.
I continue to run community-based groups in on- and offline spaces and provide one-to-one support to consumers who seek information in order to make healthcare decisions.
How do you feel patients and consumer advocates can be best promoting the value-based healthcare approach?
The single tool in my kit which consistently breaks through many of the usual barriers and hurdles in discussions of healthcare reform is the power of story. Every health consumer carries within themselves a story of their care experience. When captured through robust, dynamic and two-way engagement strategies, the ‘collective consumer story’ is an enormous resource for systems – part of my job is to remind consumers of the power of their voice and to keep the conversation alive.
Patients and consumers can promote the value-based healthcare approach by proving demand. Consumers can do this by actively sharing their healthcare stories in as many ways possible: among family and friends, within community groups, through hospital-based feedback processes and/or via online spaces.
The system can support this work by facilitating opportunities for consumers to share their stories and experiences of the healthcare system. Consumer voice is the mirror which allows a self-reflective system to measure its performance meaningfully and with authenticity. System-defined ‘excellence’ in care runs the risk of missing the point if it does not determine what the consumers themselves consider to be ‘excellent care’. For example, in The Importance of Patient Perspective in Outcome Measurement, I explore my own experience as a maternity health consumer by telling my story from two angles: the birth of my child from the clinical perspective and then this same birth again from my own personal perspective. This telling of my story produces two vastly different accounts of my healthcare experience: in one, I am determined fit and healthy, and in the other I am anything but.
Consumers are the experts of how care is received and should be, therefore, an integral part of outcome measurement. This is one reason why I am committed to supporting the work of ICHOM to expand models of outcome measurement which heavily weight patient-reported outcomes – this is one way in which we can begin to formally gather the ‘collective consumer story’ as measurable data for the purposes of system improvement.
What are your reflections about the progress of value-based care in Australia? How do you see the patient positioned centrally in the regional movement?
In Australia, there is currently a great opportunity to move towards a value-based healthcare model. The public sector perpetually needs to make budget savings, and the private sector faces a need to deliver increasingly competitive healthcare at a time when consumers are more empowered than ever to access information and demand ‘results’. These pressures coupled with national accreditation standards requiring sites to formally prove their standards of consumer engagement mean there is a financial and operational imperative to engage consumers and consciously direct resources where they will deliver ‘best bang for buck’, both from the system perspective and the consumer’s. Finite resources must be invested in the outcomes which matter most to patients – the efficiency of a value-based model not only allows this, but it also naturally and meaningfully engages consumers at a time when this is central to accreditation processes.
My belief is that targeted consumer ‘champions’ will help to humanise the transition to a value-based model of care by reminding all of ‘why we are here’. Not only can such champions assist in the development and implementation of value-based care, but they can also be a valuable link between the system and its users, completing the feedback loop, which allows value-based systems to continue evolving in a responsive way.
What are you most excited about for this year’s conference? What would you say others should expect who haven’t attended before?
The ICHOM conference this year is a fantastic opportunity to hear from industry innovators, to gather practical information about the implementation of value-based models and to be inspired to continue to work on improving healthcare. ICHOM events are consistently rich with high quality research and fresh ideas; expect to leave with an exciting new network of contacts, renewed enthusiasm for the work that you do and a persistent case of ‘VBHC’ which – once under your skin – you won’t be able to shake.
Registration for the ICHOM Conference is now open! The Early II deadline is on September 22nd. Please click here for more information and to register.