ClinicSpeak & PoliticalSpeak: time for international quality standards

How long should pwMS have to wait for some quality standards to assess their MS service? #ClinicSpeak #BrainHealth #MSBlog

“Some of you may remember my recent post on taking NICE to task on their poor, and arrogant, attempt to get consensus on a set of quality standards regarding the management of MS. The tragedy of the situation is that it was such a wasted opportunity. The fact that none of the important stakeholders endorsed, and/or supported, the quality standards means they are essentially dead and unlikely to be adopted. In this context the article below on standardising patient outcome measures is therefore very timely and self-explanatory. As part of our ‘Brain Health: Time Matters‘ initiative we are exploring this exact issue. How can you expect to change behaviour without measuring it? What we really need is a simple internationally accepted continuous quality improvement tool (formerly called an audit tool) to collect metrics to allow the community to assess quality of the services that being provided to pwMS. Don’t you want to know how good MS Service is?”

“It is a worry that The International Consortium for Health Outcomes Measurement (see below) doesn’t appear to have MS on their short-list. Why? This is clearly challenge for the Multiple Sclerosis International Federation and other MS Societies. We need to get MS on the list.”

Porter et al. Standardizing Patient Outcomes Measurement. N Engl J Med 2016; 374:504-506. 


…… The arc of history is increasingly clear: healthcare is shifting focus from the volume of services delivered to the value created for patients, with “value” defined as the outcomes achieved relative to the costs……

….. If we’re to unlock the potential of value-based health care for driving improvement, outcomes measurement must accelerate. That means committing to measuring a minimum sufficient set of outcomes for every major medical condition — with well-defined methods for their collection and risk adjustment — and then standardizing those sets nationally and globally…..

….. efforts at outcomes measurement have overwhelmingly focused on clinical status (e.g., survival and “objective” outcomes that are readily captured by laboratory tests) and left out functional status, even though improving functional status is why patients seek care…. 

….. Patient-reported outcomes are beginning to be measured but are not yet routinely captured for most conditions…..

…… progress on outcomes measurement has been slowed dramatically by the “let a thousand flowers bloom” approach, in which each organization reinvents the wheel, tweaks existing measures and risk factors, or invents ones of their own. Sensitivity to physicians’ concerns about being judged unfairly results in a tendency to exclude patients from outcomes comparisons instead of incorporating accepted risk-adjustment methods…… 

……. The time has come to change this trajectory. Providers, payers, patient-advocacy groups, and regulators can come together to create a process to agree on a minimum sufficient set of outcomes for each important medical condition — including rigorous definitions, risk-adjustment factors, and methods. Then we can agree on standardizing these measures both nationally and internationally. The establishment of standards will speed up measurement, allow providers to collect and share data on outcomes more efficiently, and allow comparisons that will accelerate care improvement……

…. There is also a new institutional approach that offers a promising proof of the concept that standardization of outcomes-measure sets can be achieved rapidly for a growing range of conditions. The International Consortium for Health Outcomes Measurement (ICHOM) has convened groups of experts on specific conditions, together with patient representatives, to outline minimum standard outcome sets and risk factors using a structured process. ICHOM has approved or is in the final stages of approval of more than 20 sets covering about 45% of disease burden in the United States and other high-income countries, with many more to come. The international nature of the effort has allowed participants to see that patients with a given condition have the same or similar needs everywhere. Reaching agreement among international groups of clinicians on condition-specific outcomes sets has been surprisingly straightforward……

…. We predict that a time will soon come when it will be hard to believe that measurement of outcomes that mattered to patients was rare in 2016 — and organizations that measured them each did it in their own way. Universal measurement and reporting of outcomes won’t happen overnight. But we believe that agreeing on and implementing respected standard sets of outcomes for each medical condition is a practical and decisive step in accelerating value improvement in health care. This is an agenda whose time has come…….

In case you forgot the following are the NICE Quality statements: 

NICE Approved Quality Statements in relation to the management of MS in the NHS:

  • Statement 1. Adults with multiple sclerosis (MS) are given support at the time of diagnosis to understand the condition, its progression and the ways it can be managed, by the consultant neurologist making the diagnosis.
  • Statement 2. Adults with MS are offered a face‑to‑face follow‑up appointment with a healthcare professional with expertise in MS, to take place within 6 weeks of diagnosis.
  • Statement 3. Adults with MS have a single point of contact who coordinates access to care from a multidisciplinary team with expertise in MS.
  • Statement 4. Adults with MS who have problems with mobility or fatigue are offered support to remain physically active.
  • Statement 5. Adults with MS who have a relapse that would benefit from treatment are offered treatment as soon as possible and within 14 days of the onset of symptoms.
  • Statement 6. Adults with MS are offered a comprehensive review at least once a year by healthcare professionals with expertise in MS.

CoI: I am a member of the ABN MS and Inflammation Advisory Group and was responsible for coordinating the ABN response to the NICE Quality Standards consultation document.

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