Patient centricity: managing the matrix of expectations

Virgil Simons questions how close we are to truly meeting the requirements of patients and explains how their needs are complicated by the demands and assumptions of families, doctors, healthcare systems and pharma.

The US Institute of Medicine defines patient-centered care as: ‘Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions’1. This definition seems clear, understandable and actionable, so why are there so many insufficiencies in the attainment of this goal? Have we really reached a point where patient centricity is a fact, or is it still a wished-for illusion? That neither choice is definitive should not be a surprise because the reality of patient centricity depends, to a great extent, on perspective.

If patient centricity – as the objective and desired goal – is the ‘what’, then the delivery of that objective – best possible patient healthcare – becomes the ‘how’. But as simplistic as this seems, the actuality is complicated by two very relevant factors: perspective and expectations.

In the ideal world of patient-centered care, the patient expects his/her clinical status to be reviewed collectively by physicians from each of the potential disciplines of therapeutic care and for a collective decision to be taken, with the patient’s input, on the one with best outcomes both therapeutically for best quality of life.

Patients expect that the recommendation would take into consideration their hoped-for disease-free survival and as normal a life as possible. Barring that, they should expect to receive information from the physicians which helps them manage their expectations, based on disease stage, complicating clinical factors and so on. There should be the expectation of a clear dialogue on the patient’s status, treatment options, potential side effects and a realistic projection of the quality of life that could be attained.

Assuming that these expectations are met, it should be remembered that family members often have their own expectations, which may not, in fact, mirror those of the patient. In the face of terminal illness, for example, will they accept the patient’s desire for ‘quality of death’, or will they want whatever measures may be available to possibly extend survival? Will the family push for extraordinary interventions to maintain an illusion of life or allow the natural progression of life? Will the family take on burdensome financial expenses in the belief that somehow survival can be purchased?

Commercial expectations

Expectations don’t just sit on the side of the patient and family, but also with the physician. Does the doctor expect a better possible outcome if he/she uses just one more protocol or puts the patient into a clinical trial? Can the patient receive better care if referred to a more famous medical centre or physician with access to a broader range of resources? Can they be better served if they are put on to a different drug agent, which may not be covered by their current health insurance plan?

Further complicating the effectiveness and efficacy of the practitioner is the healthcare system that employs them and its expectation for income via Revenue Billable Units (RBUs), in-hospital turnover, and physician financial productivity. Additionally, the balance is swinging away from subsidised government care for lower income patients to a model that seeks greater utilisation by privately-insured patients, with the expectation of greater return-on-investment to the medical centre.

The Affordable Care Act in the US seeks to address some of these issues by encouraging amalgamation of primary, and some speciality, care services into groups that should be able to deliver higher standards of care at lower costs. Comparatively, the National Health Service in the UK has a more relevant incentive system in place, based on quantitative improvement in the patient’s health.

On top of all of this, the perspective and expectations of the pharma industry need to be taken into account. Pharma’s mission is to develop products that will ultimately positively benefit the health of society, but this is not a charitable endeavour. Pharma’s developments have resulted in a total of 14.5 million survivors of cancer being alive in the US on 1 January 2014, with that number expected to rise to 19 million by the year 20242. Worldwide, in 2011, it was estimated that there were over 28 million people who had survived cancer within five years of diagnosis3. Further, it is estimated, based on 2012 data, that there will be approximately 14.1 million new cancer cases each year worldwide, with increasing incidences of diagnosis and concomitant increases in the numbers of survivors4.

While we have seen pharma adopt seemingly relevant practices and management emphasising the centricity of patients, is this true in practice? Mark Kessel recently wrote in Nature Biotechnology: “… today’s companies are measured on how well their stock performs and boards of directors incentivise management accordingly to meet Wall Street’s demands. The needs of patients are secondary.” Pharma must begin to re-orientate management objectives, market execution, patient partnership engagements and standards of measurement if it wants to continue to deliver superior value to patients and not just shareholders.

So we come down to the central question: “Whose reality is it anyway?” Anais Nin, famously said: “We do not see things as they are, we see things as we are.” From all of the perspectives detailed here, we can see that there will be many, and possibly divergent, expectations as to healthcare delivery and to the reality of the centricity of the patient within the entire matrix. There will not be one answer or solution, but it should be a process of inclusion, a multidisciplinary dialogue as it were, of the myriad expectations that finally finds accord with what the patient wants, needs, and can expect.

References:

1 Institute on Medicine. “Crossing the Quality Chasm: A New Health System for the 21st Century”. Retrieved 26 November 2012

2 http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf

3 http://blogs.plos.org/speakingofmedicine/2011/03/04/addressing-the-needs-of-cancer-survivors-an-emerging-global-challenge/

4 http://www.cancerresearchuk.org/cancer-info/cancerstats/keyfacts/Allcancerscombined/

About the author:

Virgil Simons is the founder and president of The Prostate Net, an international non-profit patient education and advocacy organisation committed to providing credible and actionable information that will minimise the negative impact of prostate cancer. Using experience gained as a 19-year survivor of prostate cancer and a patient advocate, over the past 17 years he has built an organisation that addresses disease risk awareness, early disease interdiction and advanced-stage disease management. Contact him on Email: virgil@prostatenet.org

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