Patient-Reported Outcome Measures: Progress Across the Pond

David Introcaso

This past October CMS Administrator Seema Verma announced the agency’s “Meaningful Measures” initiative.[1] Ms. Verma launched the initiative because, she admitted, the agency’s current quality measurement programming, widely criticized for years by MedPAC and others, ran the risk of outweighing the benefits. Under “Meaningful Measures,” CMS will, Ms. Verma stated, put “patients first” by aligning a smaller number of outcome-based quality measures meaningful to patients across Medicare’s programs. Since “the primary focus of a patient visit,” Ms. Verma said, “must be the patient,” the primary focus of the initiative will be “to focus health care quality efforts on what is really important to patients.”[2] As an indication of this commitment, immediately after Meaningful Measures was announced the National Quality Forum’s (NQF’s) Measures Application Partnership (MAP) began work reviewing a record number of CMS-recommended Patient-Reported Outcome Measures (PROMs).[3]

There appears to be an ever increasing interest in PROMS in the US. For example, last year The New England Journal of Medicine published three PROMs-related “Perspective” essays that moreover described initial success by a few early US PROMs adopters. One of these essays also noted that England and Scotland had “extensive experience” in the use of these measures.[4] Though possibly overstated, we believe providers in the US can benefit from, for example, our experience in the United Kingdom (UK) developing and implementing My Clinical Outcomes (MCO) (at: www.myclinicaloutcomes.com), a digital patient reported outcomes measurement and analytics platform that is now used in the treatment of several chronic conditions in a variety of clinical settings across the UK.

MCO was initially developed in collaboration with orthopedic surgeons working in the National Health Service (NHS). These surgeons were seeking a way to systematically follow-up with their patients after joint replacement surgery largely in order to better economize on their use of clinical resources or more appropriately or efficiently identify those patients in need of follow up face-to-face consultations. The web-based platform was developed to work flexibly around existing clinical work flows.

As implemented patients are served a tailored combination of PROMs depending on their condition and stage of treatment. Outcome performance updates are regularly and automatically requested throughout treatment and follow-up. Clinicians and their patients can track progress as it is relayed via a personalized dashboard. This optimizes their care delivery, especially the timing of treatment. For example, using MCO to monitor weight loss relevant to scheduling surgery or to make more informed or shared decisions that includes better understanding the range of treatment alternatives and their trade offs.

Since 2002 all implanted orthopedic medical device data in the UK is entered in the UK National Joint Registry.[5] The registry serves as a surveillance or patient safety tool. In addition, the British Orthopaedic Association (BOA) has long recommended regular long-term specialist follow-up care for all joint replacement patients in order to prevent post surgical complications. Nevertheless, clinical and technical constraints have meant many orthopedic implant patients are lost to follow-up. However, because of the results MCO has demonstrated in orthopedics[6], national commissioning guidance has been updated to now recommends the use of web-based PROMs to support effective and safe clinical follow-up[7],[8]. The recommendation is based in part on evidence demonstrating patients reporting the use of PROMs motivates them to be more engaged in their care and improves their ability to self-manage. For example, one arthritis patient with both hip and knee replacements, commented, “I like the fact that I can see the results as well. I find it very reassuring that I am regularly reviewed by my consultant but that also I don’t have to make long unnecessary journeys just to say I am feeling fine.”

Patient-reported outcome benefits now appear in other clinical conditions as well. For example, in 2017, Basch and others published randomized control trial evidence demonstrating longer survival after implementing electronic PROMs for patients with advanced solid tumor cancer[9]. The study group was supported by a digital PROMs platform that the patient and their physician could access. Use of the tool correlated with a median survival five months greater than the usual care group. This research has stimulated significant interest in the application of digital PROMs for cancer care in the UK. MCO is now working with NHS Scotland to develop a bespoke clinical application for cancer patients[10] as well as with Macmillan Cancer Support and the Royal College of Radiologists to pilot the technology in patients undergoing radiotherapy.

The UK National PROMs Programme,[11] established in 2009, currently publishes PROMs data from prior to and six months after hip and knee replacement surgeries. While this certainly is a step in the right direction, we should note currently the impact and utility of the program is limited by a moreover pen-and-paper approach; the program’s scope remains narrow with no longitudinal view and clinicians and patients cannot access individual results in a timely fashion to inform care.

On the private side, a government review of the private or independent UK healthcare sector which provides roughly 20 percent of UK acute care, concluded in 2014 that there was a lack of transparency on cost and quality[12].. As a result recommendations were put forward that all private healthcare providers be required to collect PROMs for all patients undergoing any one of 14 procedures[13]. Drawing on lessons from the NHS program, emphasis was placed on digital collection to maximize clinical utility and the publication of the data both for hospital and clinician-level review and for public consumption to facilitate improved patient choice. All this would be enabled by the creation of a new information organization titled the Private Healthcare Information Network (PHIN). As a result of these new requirements, groups such as Spire Healthcare with 39 sites nationally and several independent hospitals, are exploiting MCO to meet the requirements of submitting PHIN data. Private providers are also using this opportunity to collect longitudinal outcomes data and make the data available to their their clinicians and patients as it is collected.

As clinical investigations and treatment protocols become increasingly more complex, expectations for the improved value healthcare systems need to provide are increasing commensurately. However, the long-standing challenges of wide variation in access and quality, even within a single system, and spiraling spending are placing an ever greater strain on health system delivery posing a risk to continued progress. The World Health Organization (WHO) estimates that upwards of 40 percent of healthcare spending globally is wasted on ineffective care delivery. Even in developed OECD (Organization for Economic Cooperation and Development) countries, the estimate remains significant at 20 percent[14]. A major cause of waste is the mismatch between actual patient need and the utilization or consumption of clinical resources. Systematically capturing outcomes data at the patient level throughout full episodes of care allows clinicians and payers to more intelligently prioritize resource capacity and delivery relative to expressed patient need.

The phrase “value-based healthcare” describes this shift in emphasis where the goal is to maximize health outcomes delivered per dollar spent[15]. The movement to achieve greater value was confirmed by a Lazard survey in 2017 of C-level healthcare executives and investors throughout Europe and the US. Nearly half, or 47 percent, of respondents believed value-based or risk-sharing pricing models will have the most transformative impact on health care over the next five to 10 years. (Only 38 percent thought scientific breakthroughs would be as impactful.)[16] In the UK, various government initiatives are now prioritizing the use of outcomes data to drive value and among other things reduce health care disparities be it through the development of local Sustainability and Transformation Plans, Integrated Care Systems[17], or national performance improvement projects such as “Getting It Right First Time” (GIRFT)[18]. We are also seeing engagement from, among others, the Scottish government, Aneurin Bevan University Health Board, Royal Free Charity, University College London Hospitals and numerous individual health providers.

Beyond the UK, last year the World Economic Forum acknowledged value-based healthcare as the only credible response to unsustainable increases in healthcare spending worldwide[19]. The Forum’s report was precipitated in part by the work accomplished by International Consortium of Heath Outcomes Measurement (ICHOM) (prominently noted in the Forum’s report). ICHOM, a non-profit organization founded in 2012 by the Karolinska Institute in Sweden and others. It was established to create global standards for outcomes measurement at the level of the clinical condition, or as the consortium states, to “unlock the potential of value-based health . . . by driving adoption and reporting of these [outcome] measures worldwide.” To date ICHOM has created 22 outcome-based quality measure sets that account for approximately half of the global disease burden. These measure sets are currently in use in nearly 700 hospitals in over 32 countries. Because of this work, enabled in part by MCO’s role as a technical partner, ICHOM today collaborates with 80 partners worldwide. ICHOM’s efforts were also recognized last year when the OECD signed a letter of intent to collaborate with the consortium on the collection, analysis and publication of patient reported outcomes for international comparisons[20].

This past October, or a few days before Seema Verma announced CMS’ Meaningful Measures initiative, ICHOM held a two-day conference in Washington, D.C. that attracted over 600 participants from the US and 30 countries overseas. During the meeting CMS leadership told attendees the agency’s goal was to rapidly develop and collect date from patient reported outcome measures. CMS leadership also candidly admitted the agency can do a better job leveraging or exploiting measure sets developed and employed overseas, notwithstanding the challenges of appropriate risk or case mix adjustment. While healthcare in UK still has a long way to go in collecting patient-reported data and redesigning clinical care accordingly, we have credible reason to believe the US could learn from our experience. We welcome the opportunity to collaborate.

[1]    “CMS Administrator Verma Announces New Meaningful Measures Initiative And Addresses Regulatory Reform; Promotes Innovation at LAN Summit,” CMS press release (October 30, 2017) at: https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2017-Press-releases-items/2017-10-30.html.

[2]    See: CMS’ “Meaningful Measures Hub,” at: https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/MMF/General-info-Sub-Page.html.

[3]    See: https://www.qualityforum.org/map/.

[4]             Baumhauer Judith F. Patient-Reported Outcome – Are They Living Up to Their Potential? The New England Journal     of Medicine July 6, 2017;377:6-9.

[5]    See: http://www.njrcentre.org.uk/njrcentre/AbouttheNJR/tabid/73/Default.aspx.

[6]    See: http://www.health.org.uk/programmes/shine-2014/projects/virtual-follow-hip-and-knee-replacement-patients.

[7]    See: https://www.boa.ac.uk/wp-content/uploads/2017/11/Pain-Arising-from-the-Hip-Guide-Final.pdf.

[8]    See: https://www.boa.ac.uk/wp-content/uploads/2014/01/Painful-OA-Knee-Guide-Final-.pdf.

[9]    Basch E, et al, Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. Journal of the American Medical Association 2017;318:197-198.

[10]  See: https://cancerchallengescotland.com/funding-calls/new-approaches-record-and-integrate-cancer-proms-and-prems/phase-1-projects.

[11]  See: http://content.digital.nhs.uk/proms.

[12]  See: https://www.gov.uk/government/news/cma-publishes-final-report-on-private-healthcare-remittal.

[13]  See: https://portal.phin.org.uk/Lists/Resource/PROMS%20Reference%20Guide.pdf.

[14]  See: http://www.bmj.com/content/356/bmj.j570.

[15]  Porter ME. and Teisberg EO. Redefining Health Care: Creating Value-based Competition on Results. Boston: Harvard Business School Press, 2006.

[16]  See: https://www.lazard.com/perspective/global-healthcare-leaders-study-2017/.

[17]  See: https://www.england.nhs.uk/systemchange/.

[18]  See: http://gettingitrightfirsttime.co.uk.

[19]  World Economic Forum. Value in Healthcare. Laying the Foundation for Health System Transformation, April 2017. At: https://www.weforum.org/projects/value-in-healthcare.

[20]  Coulter A. Measuring What Matters to Patients. British Medical Journal 2017;356:J816.

David Introcaso is a healthcare research and policy consultant based in Washington, D.C.

Categories: Uncategorized

1 reply »

  1. Say, hypothetically, that every patient has some 1, co-morbidity, and that every person has 2, some idiosyncratic reaction to drugs, and that 3. we all have some genetic mutation, copy number variation, insertions or deletions in our genomes….could we THEN exercise patient reported outcome measurements that would have much meaning? Or, are we going to be in the thick of personalized medicine before we can enter this PROMs era? Are we thinking that illness categories can be so well defined that these boxes of disease and outcomes can be evaluated this clearly? I am thinking of a CHF patient who cannot tolerate beta blockers and has diabetes and obesity…..