Patient centricity – from hubris to humility

In January I was ‘treated’ by 10 HCPs in 7 days and more than 100 patients in 24 hours. The medics managed my physical state; the patients guided my psychological well-being, helping me reach decisions and an understanding more readily by sharing their information and experiences.

Both ‘types’ of experts served great purpose. I miscarried during what was originally thought to be the 11th week of a pregnancy. The nurses, physicians, lab technicians and sonographers sought to diagnose, deal with the symptoms and ensure I was in working order to get back to work. The fellow patients provided explanations, recommendations and real-world data around what had happened and what to think of next. They got me back to my life.

This reminded me about what it means to be a patient and taught me about what patients need …

What does patient centricity mean – away from the articles and in reality?

As a Medical Biochemist, working in the pharmaceutical industry and publishing regularly about the importance of patient engagement – I am always in the middle of the ‘patient centricity’ buzz. I find this to be a privilege and enjoy raising my voice to speak up for patient needs. We are currently awash with case studies about why, how, when and where pharma should be more inclusive with patients. And I hope that continues. There’s nothing quite so sobering, however, as being a patient again and not ‘only’ talking about what other patients want from this valuable debate. Hence my professional polemic was catalysed from academic to actual over the course of those seven days of medical and patient support.

What did patient centricity mean to me personally? I was:

  • Grateful that seasoned professionals worked seamlessly during a state of possible emergency;
  • Impressed by a regional health system, which had excellent resources and attention to detail and was able to fast-track my need;
  • Confused by the information provided – especially trying to adhere to practical details and absorb complex detail (appointments, kinds of tests, interpretation, lots of white coats in one room) whilst acknowledging a significant loss had taken place and I was in pain and vulnerable;
  • Overwhelmed by the lack of explanation available and the medical terminology and jargon that seemed to further obstruct clinical conclusions and advice;
  • Amused when different departments within hospitals failed to connect such that I was reading an alarmingly detached leaflet on ‘informed consent and disposal of foetal tissue’ as the postman delivered the appointment for my ‘pregnancy dating scan’ with a handwritten note from the midwife saying “don’t forget you’ll need to bring a urine sample"...;
  • Irritated when the very well-meaning ward nurse told me “all the tests are back and everything’s as it should be.”
  • Disappointed that as a proficient user of the social web to manage my wellbeing, there were relatively few ‘thorough’ resources to be sourced from industry focusing on women’s health. There is much debate about men’s health and the stigma of some male sexual health conditions including erectile dysfunction, premature ejaculation and infertility; but even though women are labelled as ‘talking about everything’ there was little scientific substance to be found about female fertility or the treatments to help.

I would have been thrilled to have found an information hub of credible content – and especially pleased if that had been funded by the pharmaceutical industry to bring all the experts to a central place. A simple, compassionate place.

That’s where the ‘patient centricity’ endeavour starts to have meaning – the irritation was because although I was thankful that the nurse had gone out of her way to call and reassure me; what I actually needed was the raw data. What are my HCG levels; what do the sonograms show and foretell; who can I discuss the chronology and implications with to avoid ill-health or a repeat of this episode in the future? Which is where I turned to my fellow patients for help. Upon doing so, who would’ve known that super-fertility is a common effect in the month following a miscarriage? How insightful that ‘failed ovum’ is very common and not as harsh as it sounds. The physician does their job perfectly – controlling the immediate physical problem. The fellow patient has a key role too – where the clinical transposes to the caring. Patient centricity is the wrap-around service that helps a person make their way through the necessary medical melee. I needed both. I would have been thrilled to have found an information hub of credible content – and especially pleased if that had been funded by the pharmaceutical industry to bring all the experts to a central place. A simple, compassionate place.

Compassion in the simple things

Recently, much attention has been given to Kate Granger who launched the #hellomynameis campaign on Twitter to encourage HCPs to introduce themselves to patients. A physician herself, Dr Granger started her campaign to improve the patient experience in hospital, shortly after she was diagnosed with an aggressive, terminal form of cancer. Dr Granger described this attempt as her “legacy to improve compassion in clinical care.” The doctor who informed her that her cancer had spread did not introduce himself to her and did not look her in the eye and other staff failed to introduce themselves when caring for her. Dr Granger describes, "The lack of introductions really made me feel like just a diseased body and not a real person". When an introduction happened, Dr Granger explains, "it really did make a difference to how comfortable I was and less lonely I was in hospital". This is the common thread that runs through all case studies about patient centricity; small things make huge differences – especially when the person is seen, heard, helped beyond the ‘body on the bed’.

Activities are taking place within pharma that echo this injection of compassion and seek to introduce patients to the industry. Companies like Geodon Richter are making huge strides to being part of ameliorating the loneliness of the patient experience. Haider Alleg, Consultant Director at GR outlined what this involves, “For Richter, the key objective would be to set up a common understanding on how to better work with patients groups, in order to help patients put a name on their condition, and help HCPs focus on highly demanding cases. This will start with first asking the question: are we the best suited to handle conversation with patients or patients groups? When what to do is pretty clear, the answer is more in how to execute it. We would like to take 2015 to find the appropriate recipe for doing it, and understanding the variables from a country to another, or from a disease area to another.”

Reciprocity required: be visible, accessible, responsible

Originally social networks were a purely discursive medium to provide emotional support as an adjunct to clinical authority. Today, the rapid assimilation and sharing of social data now provides insights into underlying disease pathology and responses to treatment. Such aggregation of social health data is starting to have an impact on health outcomes and resource allocation. Participation in online social networks for example has:

  • Provided more accurate, frequent tracking and earlier diagnostic intervention to extend treatment options and improve outcomes (HealthUnlocked, 2012).
  • Altered referral patterns (Turnipseed 2013 reported a tripling of referrals from social networks in cardiovascular disease with a 70 percent decrease in referrals from traditional diagnostic work-up).
  • Enhanced treatment adherence and provision of 24/7 drug and device support.
  • Changed the dialogue and engagement opportunities between a patient with a physician and the pharmaceutical industry.

Overall the benefits of socialized health sharing outweigh the concerns around accuracy of information or loss-of-confidentiality. People seek to share their health stories for the greater good – accordingly there is a desire to improve the quality of the exchange. Socialized health curation reflects the greater shift to a personalized, consumer-approach to self-manage both good and ill-health. We no longer consider ourselves to be victims of disease, but we seek to be victorious in the determination to take greater responsibility for our health.

As such, I am sharing my patient story here – for the greater good. I would like patient centricity in 2015 to be about reciprocity. Patients need the pharmaceutical industry to be visible, accessible and responsible. We need to know your name as much as we need the doctor to introduce himself. As providers of phenomenal healthcare solutions and recipients of phenomenal profits for such products, it is respectable and right that industry should be part of the era of socialized health. You deserve to be at the epicentre of patient centricity and I invite all companies to build, implement and share ‘Patient Charters’ that guide interactions. Where this might have been interpreted as patient hubris in the past, social media amplified the act of meliorism – that small occurrences of kindness amount to great benefits  – we can all contribute to medicine now, we can all say #hellomynameis …with compassion and humility.

Emma D'Arcy has been a leader, lobbyist and innovator in healthcare and proponent of the value insights gained from socialized health ad patient centricity for 20 years. A medical biochemist who is completing phd research about the impact of social media on medicine, Emma helps the pharma industry upskill and adapt to the era of participatory medicine where everyone is a consumer and a contributor. When is isn't writing articles, chairing events or educating industry, Emma is writing poetry - or failing to parent 2 children, a large dog and an irascible cat.

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