We are all patient-centric now — aren't we?
With patient centricity firmly on the agenda, what is true patient centricity and how can we translate the intent to align more with action? I interviewed executives at Novo Nordisk and Sanofi to highlight the three key things to consider when seeking to be patient centric.
As we approach the year end, it’s interesting to comment that 2014 has been the year of ‘patient centricity’. Increasingly, we’ve seen the pharmaceutical industry declare their intent to relate more directly with patients - Sanofi recently appointed the first ‘Chief Patient Officer’, for example. Does this mean we are all on the same page regarding patient centricity? Not universally.
Although I’ve been fortunate to be invited by Lilly, Sanofi, Novo Nordisk and ViiV to contribute on communication initiatives that enhance trust between patients and industry, we still need to to plug the dissonance in the system; more than 80% of patients wish to improve their relationships with pharma, however fewer than 30% of brands for chronic diseases have a patient support programme. What is true patient centricity therefore, and how can we translate the intent to align more with action? I interviewed executives at Novo Nordisk and Sanofi to highlight the three key things to consider when seeking to be patient centric.
1. Nothing about us without us
True patient centricity comes when a company actually brings patients into all their development and educational planning meetings. Several companies are excellent at doing that. Janssen, Novo and Sanofi are particularly adept at understanding patient journeys and the insights that working with patients and carers presents.
We believe it’s extremely important that everyone in the organization has this insight so that it can underpin everything we do.”
Leigh Hope, Senior Product Manager, Biopharm at Novo Nordisk explains: “We like our entire team to hear the individual patient story so we connect with their journey on a personal level. The company sets itself an annual objective to ensure that every single employee, regardless of their role, hears directly from a patient. Novo Nordisk Biopharm has led ethnographical research in several disease areas to gain insight into the ‘real world’ effects of diseases and therapies in patients’ daily lives which has gone on to be published and even recently been recognised as a finalist at industry awards.”
Becky Reeve, Head of Professional Relationships, Diabetes at Sanofi UK describes how Sanofi embraces the same approach — “We regularly ask people with diabetes to come in and talk and work with us in the marketing and medical teams and often invite patients to our training events for our sales team and management teams. This enables us to understand what it’s like to live with diabetes. We believe it’s extremely important that everyone in the organization has this insight so that it can underpin everything we do.”
2. Collaboration counts
Patient centricity is best served when pharma employ Patient Opinion Leaders directly, open research grants to collaborate with all interested parties wholeheartedly and share failures and successes. There's really no point engaging brilliantly with patients but then not sharing that - we solve health problems more rapidly if we solve them together. Patients expect competitive collaboration between all healthcare organizations to ultimately expedite innovation in the delivery of new solutions to health crises. People used to be victims of ill health; now they are seeking victory over ill health. They expect more and to do that with industry and the medical community. They are no longer thrilled if a pharma company only has lines of communication open to them - they want industry to lobby with, for and alongside them and are comfortable with increasing engagement.
We involve patients and patient organizations in our Medical Education programs, providing a platform for discussion and insight into how advances in research can be incorporated into the treatment paradigm to meet the needs of the patient.”
Companies that transparently collaborate earn trust with patients. Becky Reeve outlines the multiple alignments that Sanofi activate — “In the Diabetes Division in the UK we work very closely with patient advocacy groups such as Diabetes UK, Input, JDRF, DRWF, DWED and the newer “online patient communities” such as OURD and TheGBdoc. These relationships allow us to listen and understand the lives of people living with diabetes and their carers. We can then look and understand how our products and services can directly support people living with diabetes with a view to developing additional solutions based on this feedback. We also support the All Parliamentary Group on Diabetes through an unrestricted educational grant and all of the discussions include patient representatives.”
At Novo, the importance of collaborating with patient groups is highlighted and sought for all marketing and communication projects: Leigh Hope explains that, “Working closely with the patient organizations that support the patients and families our products are designed to help allows us to identify the important and topical areas and keep in touch with those who have arguably the best understanding of our products. We value very highly the input of patients' experiences and build into our marketing plans. We involve patients and patient organizations in our Medical Education programs, providing a platform for discussion and insight into how advances in research can be incorporated into the treatment paradigm to meet the needs of the patient.”
3. People over profits
The era of socialized health means that patients have changed the social contract they have with their doctors and with healthcare providers. Patients are influenced by, and influence others as consumers of healthcare. Accordingly, they are agile and adept in discerning between drugs and manufacturers and will readily compare, contrast and curate information about drug use and about drug companies. Just as pharma companies want to engage with ‘real people’, reciprocally, patients want to connect with ‘real people’ in pharma. We understand that there are profits to be made from products, but it is disingenuous of media outlets with a story to sell of pharma as the ‘pantomime villain’ to purport that individuals in the industry aren’t highly committed to solving problems in healthcare. Industry does not put people over profits.
It can be disappointing for pharmaceutical professionals that their commitment is questioned. Becky Reeve says: “I would like there to be an understanding that for many of us working in pharma, we actually we do care about people who live with the conditions we provide treatment and solutions for and that we would also like to cure some diseases too. At Sanofi, we spend a lot of time and resources working with JDRF who exist to find a cure for T1 diabetes, something we welcome as much as anyone else.”
People like Becky are prepared to always go further to keep improving the perceptions of industry to patients — “… many of the activities I am involved with on behalf of Sanofi UK & Ireland are purely altruistic and support the diabetes patient community. Sanofi launched the first gamification app in diabetes “Monster Manor” free onto the Apple App store and Google Play last year to support children with T1 Diabetes with what is a daily chore for people living with diabetes; “blood glucose testing”. The idea was to have a game that made this more fun by gaining a reward through play every time a child tested. Children with diabetes were very much at the heart of the development of this game and the project started with a day spent with children with T1DM and their parents testing the game and feeding back. We also support educational inspirational events for patients and carers such as the annual 'Flying with Diabetes Day', which provides much needed patient education and inspiration to those that live with diabetes, showing that the condition does not have to limit their ambitions.”
Centrifuging the centricity — the challenges ahead
Now that patient centricity is firmly on the agenda in industry, more will need to be made of the opportunities and challenges of connecting with patients and their carers via digital and social media. As Leigh Hope explains, “despite being the first port of call for patients and healthcare professionals alike, using digital and social tools is still difficult in pharma. It is becoming easier to provide patient apps as the general types of health app becomes more ubiquitous, however it’s likely that a more liberal approach to online regulation would result in better opportunities to show a genuine willingness from the pharmaceutical industry to have a valuable ongoing conversation with patients and the teams that care for them on the level we all operate on today.”
I would like to see pharma do more direct patient education events and initiatives to support people with diabetes with the tools and behaviors to live full lives with diabetes. I’d like us to do this without the perception that we are doing it sell more drugs.”
Ultimately this will provide the insights about drug use and patient needs to help better inform and guide clinical decision making. Clinical input into significant decisions around the commissioning and delivery of drugs and services is becoming increasingly limited in many areas as health authorities strive to make savings. Insights garnered from socialized health aggregation will highlight areas of unmet need and efficiencies. Getting that patient voice into decision-making by health authorities is one of the most effective and empowering ways that pharma companies can truly embrace patient centricity.
Becky Reeve summarizes the overall benefits for a pharma company becoming determinedly patient-centric — “I would like to see pharma do more direct patient education events and initiatives to support people with diabetes with the tools and behaviors to live full lives with diabetes. I’d like us to do this without the perception that we are doing it sell more drugs.”
If 2014 was the year of ‘becoming patient centric’, it looks like 2015 will be ‘making patient centricity count’.
Next month — what patient entrepreneurship has done … interviews with the patient groups and individuals who have created ground-breaking apps that have improved patient adherence.
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