How we got to where we are now

Today we are at an inflection point for patient-centricity. The next decade is going to see significant change.

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A quick search of the term “patient-centered” in the PubMed database reveals a steady stream of articles from 1970, that began growing exponentially from the mid-1990s. The publication rate has more than tripled in the last decade from 1,120 in 2008 to 3,651 in 2018.

Similar growth rates can be recorded when searching terms such as “shared decision making”, “patient engagement” and “patient empowerment”. In all cases it is clear that this movement is only just getting started.

Many people mark the Institute of Medicines’ publication, Crossing the Quality Chasm, in 2001¹ as a milestone that introduced the idea that patient-centricity is a dimension of the quality practice of medicine. 

In Australia, the RACGP included a “Patient Focus” as one of six domains in it’s Quality Framework in 2007, ² and emphasised the importance of a patient-centred approach to quality improvement.³  Today, the college’s standards require that general practices undertake patient feedback as part of practice accreditation and then ensure that practices use these results to improve the quality of the services they offer. ⁴

At the same time, the RACP has expressed its commitment to “enabling patient-centred care and consumer engagement”. ⁵  The college states that it will: “Integrate patient-centred care into professional standards and education approaches for trainees and physicians”, and, like the RACGP, the RACP has stated that it will: “Incorporate a focus on patient-centred care into the assessment approaches of all training programs and ongoing professional development.” ⁵

AN ANALOGY

In the commercial world, there has been an analogous shift to customer-centricity which provides a key lesson: this type of change takes a long time.

Tracing the history of customer centricity typically begins in 1954 when Drucker wrote: “It is the customer who determines what a business is, what it produces, and whether it will prosper.”  It’s probably better to use 1960 as a starting point when Levitt proposed that firms should focus on fulfilling customer needs rather than selling products.⁶

This was about six decades ago. And there are still some businesses that are being dragged kick and screaming into this age of customer-centricity.

Is it reasonable to expect that the medical world will adopt patient-centricity any quicker than the commercial world adopted customer-centricity?  Probably not.

We’ve all seen variants of the “diffusion of innovations” theory that was popularised in 1962. ⁷  It describes the uptake of ideas, beginning with innovators and then early adopters and finishing with the laggards. (See graphic above)

If we assume that it will take six decades from the time of Crossing the Quality Chasm in 2001 until the final laggards catch up in 2060, then today, the early adopters are pretty much on board while the first of the early majority are beginning to climb aboard.

Today we are at an inflection point. The next decade is going to see significant change.

REGULATORY ENVIRONMENT

The Food & Drug Administration (FDA) in the US became early adopters when then president Barack Obama said that people would be treated as partners, not subjects, in the Precision Medicine Initiative. This led the FDA to establish a Patient Engagement Advisory Committee in 2015 with the observation that patient input should inform the total medical product life cycle, including:

1. Informing needs during discovery and ideation
2. Informing clinical trial design and patient-reported outcomes
3. Including patient preference regarding benefit-risk information in regulatory decision-making
4. Communication of benefit-risk information to patients during product launch
5. Including patient-centered outcomes as products are launched and transitioned to post-market monitoring

When the European Medicines Agency adopted a similar position at the same time it became clear that these changes would have an impact on the development of medicines.

BIG PHARMA’S RESPONSE

It shouldn’t be surprising that the pharmaceutical industry began responding to these changes.  In 2017, they were wondering what was feasible and how it could be achieved. ⁹

Some senior European pharma executives published the view that: “True patient-centricity requires a change in the industry’s cultural mindset, an increase in public trust, clearer roles and responsibilities within pharmaceutical organisations, openness to learn from others and a framework to measure success. ⁹ That’s not going to happen quickly.  But it is happening. Research among 2,346 employees from pharmaceutical companies in 84 countries found that 54% of respondents believe their company is making a good effort at becoming more patient-centric and another 15% believe their company is doing everything they can. ¹⁰ That means that about one in four companies are lagging.

GUIDELINES AND OUTCOMES

The philosophies underpinning patient-centricity are beginning to influence treatment guidelines for the management of chronic conditions such as diabetes and hypertension.^11,12 The new recommendations for asthma management by the Global Initiative for Asthma appear to be another example.¹⁰

Introducing the concept of patient-centred care into treatment guidelines is not new.  In 2012, the American Diabetes Association and the European Association for the Study of Diabetes issued a joint position statement that called for a patient-centred approach to diabetes management.¹¹

Around this time, the American Heart Association produced a scientific statement about the importance of patient-reported health status as a cardiovascular health outcome and lamented the underutilisation of patient-reported outcome measures in research and clinical decision-making.¹³

When all of these shifts in thinking are activated by Google and the internet, it will be interesting to see what the  next decade brings.

References

1. Institute of Medicine. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: The National Academies Press. https://doi.org/10.17226/10027.
2. Booth BJ & T Snowden A quality framework for Australian general practice. AFP 2007; 36: 8-11.
3. Booth BJ & T McBride Patient focus and the quality framework. AFP 2007; 36: 20-22.
4. Royal Australian College of General Practitioners. Standards for general practices. 5th ed. Patient feedback guide. East Melbourne, Vic: RACGP, 2017.
5. Royal Australian College of Physicians. Framework for improving patient centred care and consumer engagement. Sydney, NSW: RACP 2016.
6. Shah D et al The Path to Customer Centricity.  Journal of Service Research 2006; 9(2): 113-124.
7. https://en.wikipedia.org/wiki/Diffusion_of_innovations
8. Terry SF and B Patrick-Lake Hearing voices: FDA seeks advice from patients. Sci. Transl. Med. 2015; 7, 313ed12
9. Du Pleissis D et al Patient Centricity and Pharmaceutical Companies: Is It Feasible? Therapeutic Innovation & Regulatory Science
10. Eye4Pharma
11. Inzucchi SE et al Management of hyperglycaemia in type 2 diabetes: a patient-centered approach. Position statement of the American Diabetes Association (ADA) and the European Association for the Study of Diabetes (EASD). Diabetologia. 2012 Jun;55(6):1577-96
12. Inzucchi SE et al Management of hyperglycemia in type 2 diabetes, 2015: a patient-centered approach: update to a position statement of the American Diabetes Association and the European Association for the Study of Diabetes. Diabetes Care. 2015 Jan;38(1):140-9. doi: 10.2337/dc14-2441.
13. Rumsfield JS et al Cardiovascular Health: The Importance of Measuring Patient-Reported Health Status A Scientific Statement from the American Heart Association.  Circulation. 2013; 127: 2233-49