Pharmaguy's Insights Into Drug Industry News
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Pharmaguy's Insights Into Drug Industry News
Pharmaguy curates and provides insights into selected drug industry news and issues.
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PC: Patient-Centricity or Merely Politically Correct? That is the Question

PC: Patient-Centricity or Merely Politically Correct? That is the Question | Pharmaguy's Insights Into Drug Industry News |

It is time that pharma started prioritising patient-centricity activities, so that the concept becomes something that patients notice and benefit from, rather than just a mantra


The mantra of patient-centricity has unquestionably become ubiquitous within pharma, and there can be few marketers in the industry who are not striving to understand the concept and turn it into something which in reality will make a beneficial difference for patients. But just how successful has that effort been so far - and what does pharma need to do to turn the aspiration for true patient-centricity into reality?


At its most basic, patient-centricity is about a duty to inform patients and their caregivers about their condition and the subsequent treatment. By providing patient-friendly support materials at key touchpoints and extending their efforts to understand, and go some way to meet, the patient's emotional or social support needs, pharma can help secure better adherence and better disease management.


If successful, this is undoubtedly a win:win for both pharma and patients - if they join and stay on the treatment pathway, they stand the best chance of improving their condition, and pharma will see a commercial benefit too.


Beyond this basic involvement in better communication comes the concept of patient engagement (another buzz word much used but not so well understood). Patients are being brought into the marketing process across the whole treatment journey. Often patient support organisation relationships are nurtured, and in some cases internal patient advocacy roles are created, by pharma in order to understand patients' unmet needs' from first symptoms through diagnosis, to ongoing management.


The evidence would suggest that the influence of the patient is still not really understood - or at least fully taken on board - by pharma companies. Despite the explosion in patient research that has taken place, all too often the findings are not awarded as much weight as the HCP findings - because the strategic value of the patient voice has not been grasped. This is merely paying lip service to 'patient-centricity'.


So is patient-centricity working well? Is it totally embedded within what pharma does? Or is it another 'buzz word concept' that at best is being partially and patchily implemented?


Further Reading:

  • “Is Patient-Centric’ Just Another Pharma Marketing Buzzword?;
  • “#Pharma's ‘Patient Centricity’ Pays Off: Patient Groups Mum on Drug Costs”;
  • “Anne Beale – one of the first Chief Patient Officer in Pharma - Discusses The Three Pillars of Sanofi's Patient-Centric Strategy”;
  • “Novartis Respects the Patient Perspective and Pays for It Too”;
  • “Patients' Views Matter: Can Pharma Be There for Them When Needed vs Whenever?”;
  • “Are Pharma Marketers Really Responsible for ‘Patient Centricity/Engagement?’";
  • "Are #Pharma Medical Departments Responsible for 'Patient Engagement?'";
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Pharma Marketing Blog: Novartis Respects the Patient Perspective and Pays for It Too! But Is It Absolutely Transparent?

Pharma Marketing Blog: Novartis Respects the Patient Perspective and Pays for It Too! But Is It Absolutely Transparent? | Pharmaguy's Insights Into Drug Industry News |

On, David Palacios, Head of Global Patient Relations, and Sanja Njegic, Head of Patient Advocacy & Relations in Europe at Novartis, explain how their company has moved from working with doctors and payers to working directly with patients. The interview was recorded at Eyeforpharma Barcelona 2016.

“We developed last year what we call the 'patient declaration,' which is a public statement about what patients can expect from us,” said Palacios. “It is an internal and external commitment. By having this document everybody in the company needs to work seriously to honor what we said in the patient declaration. That has triggered a lot of discussion internally.”

Some of that discussion must have been around "transparency" with regard to compensating patients -- especially patient bloggers and patient advocates -- for their opinion, much like pharma has traditionally paid physician Key Opinion Leaders (KOLs) for their opinions. Did that discussion result in any relevant disclosure in the "patient declaration?


Find out here.

Pharma Guy's curator insight, July 23, 2016 9:40 AM

Back in 2013, the U.S. Justice Department  filed a civil false claims lawsuit against Novartis Pharmaceuticals Corp. involving alleged kickbacks paid by the company to health care providers (read the details here).

DOJ claims that Novartis violated the Anti-Kickback Statute by paying doctors to speak about certain drugs, including its hypertension drugs Lotrel and Valturna and its diabetes drug Starlix, at events that were often little or nothing more than social occasions for the doctors. 

Many speaker programs were held in circumstances in which it would have been "virtually impossible for any presentation to be made, such as on fishing trips off the Florida coast," the suit claims.

"Other Novartis events were held at Hooters restaurants."


Read "Novartis Wines -- er, Beers -- and Dines Docs at Hooters!";

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How to Improve Patient Engagement by Partnering with #Pharma Legal Overlords

How to Improve Patient Engagement by Partnering with #Pharma Legal Overlords | Pharmaguy's Insights Into Drug Industry News |

Jutta Ulbrich, Head of Patient Engagement, and Kristin Buetecke, Head of Legal, for AbbVie Germany, presented a case study at the recent Barcelona 2016 conference. The study detailed efforts that the German affiliate had embarked on to help translate the concept of patient centricity into reality. As they explained, “Employees often haven’t been as patient-centric as they’d like to be because they worry that by trying to help, they might end up inadvertently over-stepping the mark.”

The realization that employees were often deterred from engaging with patients out of fear that they might act inappropriately motivated the Patient Engagement Team to seek a solution. They decided to partner with the legal department to create a guidebook for patient interactions. The digital manual that has been produced provides a comprehensive framework of information that can be used daily by all staff, and offers guidelines for many of their interfaces with patients. The intention was not to create another policy but to develop a ‘one-stop’ digital manual where all policies, legal requirements, applicable codices, and rules were referenced, as well as putting procedures and various templates into one document.

As Ulbrich states, “Legal teams may occasionally be seen as a bottle-neck for pharma companies, but when you’re talking about the healthcare of people, the support from the legal department and compliance are of key importance, as are the Codes of Conduct.” By allowing the legal department to become an enabler, the manual has actually increased the number of patient-centric projects that the AbbVie German affiliate has been able to embark on. As Buetecke says, “Staff now know exactly where to look to have their questions answered and where to access company guidelines for most situations that face them, so are more willing and able to make decisions that will ultimately benefit the patient.”

To date, the usage figures have been extremely encouraging. “People really seem to have accepted this as a tool for their daily use,” says Ulbrich.  She feels that this success can be attributed to the intention behind the manual, which was to be helpful in providing answers to everyday questions and situations. Given the enthusiastic response to the document since its launch, she believes it would be useful to any pharma company wishing to improve its patient centricity by providing an enabling manual that provides clear guidelines for all customer interactions.

There have already been many requests from other companies in Europe for assistance in putting together a similar document, and Buetecke says the team is happy to share the basic framework. However, she cautions that content needs to be company specific, with examples taken from a company’s daily practice in order for a manual to be relevant to the business. Ultimately, she believes that the manual AbbVie has produced provides an easily accessible framework that documents a wide-range of daily challenges to all staff and the steps that should be taken in each situation. Having convenient access to this knowledge assists employees in their patient centricity by allowing them to act confidently and within the boundaries of compliance.

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#PatientsIncluded Charter Launched!

#PatientsIncluded Charter Launched! | Pharmaguy's Insights Into Drug Industry News |

A charter for conferences promising a patient or carer-related theme

Pharma Guy's insight:

See my input to the charter here:

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Is "Patient Engagement" Just a Buzzword? A Physician's Perspective

Is "Patient Engagement" Just a Buzzword? A Physician's Perspective | Pharmaguy's Insights Into Drug Industry News |
Engaging to No Avail

[My recent experience as a patient] got me thinking about the hype surrounding the current patient “engagement” movement, in which patients are cast as vital members of the care team. The concept is embedded in the 2010 Affordable Care Act, and many industry groups have gotten on board with a range of initiatives aimed at making patients less passive and clinicians more respectful of patients’ wishes. The belief is that engaged patients are more likely to follow through on medication, lifestyle, and other health-related advice, thereby contributing to cornerstone objectives of US health care reform: improved clinical quality at lower cost and better individual and population health.

The debate continues amid many experiments to improve supportive systems for patients and their families, including educational materials, better hospital discharge instructions, Internet portals through which patients can read and learn from their medical records, community programs to promote healthy lifestyles, and, for people with complex health problems, assistance from care planners and health coaches.

The emotional language of the engagement movement—empowerment, respect, equality—carries such popular appeal that researchers’ cautions are easily swept aside. Engagement and its cousins—patient/family-centered care, patient activation, shared decision-making, patient as clinical team member—now routinely appear in promotional mailings, press releases, and at conference presentations, never mind the subject matter.

A case in point was the breakfast meeting I attended not long ago that had been billed as a forum on patient engagement. The actual presentations had more to do with marketing devices and consulting services to health care organizations. At no time did anyone mention patients except as objects of new approaches to health care delivery. Yet every speaker concluded by referencing the enormous benefit their device or clinical team-building exercise or infrastructure realignment would bring to patient-centered care and engagement.

It strikes me that there really is very little new in the concept of engagement, and simply inventing buzzy labels and slogans for what has always been part of the healing arts doesn’t contribute to understanding. A better strategy, in my opinion, would be to jettison jargon like “engagement” and go back to the plain language used by the people—you, me, the sick, and future sick—on whose behalf engagement theory is propounded: caring, empathy, kindness, and, above all, competence.

Pharma Guy's insight:

"There is a subtle form of power-politics implied in just about every deployment of 'patient engagement' you're likely to encounter that can serve to deprive the patient of authority rather than promote the autonomy of the patient," says Andrew Spong. For more on that, read Patient Engagement: Who's the Engager & Who's the Engagee? #Pharma or Patient?

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Patients' Views Matter: Can Pharma Be There for Them When Needed vs Whenever? 

Patients' Views Matter: Can Pharma Be There for Them When Needed vs Whenever?  | Pharmaguy's Insights Into Drug Industry News |

If the statement “Not everything that matters can be measured, and not everything that can be measured matters” is true, then biopharma need to quickly find a way of understanding what matters. Knowing what really matters, especially to patients, could be a huge differentiator.


But what does matter to patients? And how can the industry find out what really matters to them? Not surprisingly, the simple answer is listening to patients, as opposed to trying to manage them and making decisions on their behalf. Conducting workshops that serve as a venue for patients to discuss their challenges, needs and ideas is a good place to start. Conversations with patients can generate multiple insights and enable a community-first approach to developing solutions, where patients act as co-creators in the design process.


Essentially, the approach to patients should be human-centric, rather than disease-centric. Knowing what matters to patients is going beyond what is clinically needed to target a disease, and moving towards developing therapeutic services that are overall solutions to improved living.


What matters to people often involves emotion, sentiment and personal opinion. These concepts can be perplexing to companies, who are dependent on using objective methods of evaluation. So, how can an area as subjective as “what matters to patients” be measured and authentically assessed?


Before anything else, biopharma companies must evaluate the current business models and metrics they adopt in order to determine whether they give consideration to the subjective aspect of the patient experience. Furthermore, they must identify at which patient journey points they can “meet” the patient. By studying the journey of the patient, companies will begin to realize that there are a number of opportunities to improve customer engagement, and to “be there” for patients.


Here are four measurable areas that matter to patients.

Pharma Guy's insight:

Also read “Novartis Respects the Patient Perspective and Pays for It Too”;

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Are Pharma Marketers Really Responsible for "Patient Centricity/Engagement?"

Are Pharma Marketers Really Responsible for "Patient Centricity/Engagement?" | Pharmaguy's Insights Into Drug Industry News |

For the last few years, most pharma companies have discovered (or is it rediscovered?) the healthcare consumer — putting patients at the center of their businesses with patient-centric thinking.


But who understands and represents the patient in big pharma? Marketers do [says David Anderson, managing partner at Insight NZ, a healthcare brand advertising agency. See my insights].


Marketers have a unique opportunity to be “the voice” of the patient within their organizations. What does this mean in practice?


1) Get into the patients' shoes. Understand their world. Understand their commonality and their diversity. Understand their journey from illness to wellness. What motivates them? Why do they make the decisions they make?


2) Include patients in the conversation. Make sure they're involved in their health, which means talking to them in a language that they can understand. Health literacy is low for many chronic conditions — so don't use “dyspnea” when you can say “shortness of breath.” And it's the flu, not influenza, no matter how much the medical team may hate that abbreviation.


3) Support physicians by augmenting the clinical information they have, so that they can deliver a more holistic healthcare solution.


4) Advocate for the patient in your organization. Patient needs should come first in all levels of your organization. At every opportunity advocate for your patients and share what you know. This will help others make patient-centric decisions in their roles.

Pharma Guy's insight:

The author of this piece, David Anderson, is a managing partner at Insight NZ, a healthcare brand advertising agency. He argues that, by definition, marketing is "patient centric": 

The UK Chartered Institute of Marketing defines marketing as: "… the management process responsible for identifying, anticipating, and satisfying customer requirements profitably."


"Profitability," however, often trumps (with a small "t") putting patients' interest first. If it weren't so, I would never have anything to write about! 


For an alternative view, read this: "Are #Pharma Medical Departments Responsible for 'Patient Engagement?'"; After reading that you will see that Mr. Anderson completely ignores the medical research side of the business, which marketers don't fully understand until after the fact it seems.

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Are #Pharma Medical Departments Responsible for "Patient Engagement?"

Are #Pharma Medical Departments Responsible for "Patient Engagement?" | Pharmaguy's Insights Into Drug Industry News |

[Scooped from Paul Tunnah]: 

We seem to be at the tipping point where a majority of pharma companies are realising the importance of talking to patients when it comes to gaining a real-world perspective on all aspects of their business, from early trials to ensuring newly-launched products meet unmet needs beyond the clinic.

You see, patient engagement has myriad benefits for pharma companies that span all kinds of initiatives. To name but a few, they include:

  • Input on clinical trial input to deliver against the real-world setting (R&D)
  • Supporting with communication around clinical trial recruitment (R&D / communications)
  • Advising on unmet needs / real-world patient challenges to help with product positioning (marketing)
  • Advising on supportive solutions needed  beyond medicines (marketing / digital marketing)
  • Helping communicate key challenges at the disease area level, above the brand (patient advocacy / communications)
  • Helping identify novel commercial partners to work with (business development / strategy)
  • Helping define the successful high-level strategy for pharma (C-level)

The list goes on and on…

And so we see the increasing importance of patient-focussed roles such as ‘Patient Advocacy Manager’ and the creation of relatively new ones such as ‘Patient Engagement Manager’, going right up to the C-level with positions like ‘Chief Patient Officer’ or ‘Chief Patient Affairs Officer’.

But beyond the role titles, questions are now being asked about which department should house such personnel. There seems to be an allergic reaction to patient engagement roles sitting within commercial departments like sales and marketing because clearly the industry doesn’t want to be seen to be selling directly to patients where direct-to-consumer advertising is prohibited (pretty much everywhere outside the US). Equally, it’s generally not seen as a communications function because they’re already pretty busy managing the company’s image in the eyes of healthcare providers, policy makers, commercial/academic partners, investors and jobseekers.

The answer at the moment therefore seems to be that patient engagement roles sit within the ‘medical’ functions of pharma companies, nicely one step removed from the selling side of the business and sitting within a department focussed on education rather than branding/PR.

Pharma Guy's insight:

"Patient Engagement" like "Patient Centricity" may be a mere buzzword for pharma marketers/communicators/PR peeps, but on the R&D side of the business it's a reality as many companies begin to name Chief Patient Officers whose main function is to enlist patients in clinical trials and improve outcomes (listen to Anne C. Beal, M.D., MPH, Chief Patient Officer, Sanofi, talks about patient centricity and Sanofi's commitment to engaging patients and improving outcomes; Also, you might enjoy reading this: "Patient Centricity Should Be the Rule, Not Exception, in Pharma Drug Trials";

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To Understand Patient Needs for New Drug Development & Promotion You Must Engage Them

To Understand Patient Needs for New Drug Development & Promotion You Must Engage Them | Pharmaguy's Insights Into Drug Industry News |

When National Health Council (NHC) official Marc Boutin, J.D., speaks to an audience of pharmaceutical company executives about patient-focused drug development, he underscores the topic’s importance to the life sciences industry by stating, “Look at the person sitting on your right. Now, look at the person sitting on your left. One of them likely will be unemployed in five years.”

The reason, Boutin said, is that the individual’s company will have failed to effectively incorporate the patients’ perspectives at multiple points along the drug development continuum, which he defined as encompassing R&D portfolio selection and prioritization; identification of research questions, outcomes, and comparators; clinical trial design and recruitment strategy; regulatory review; and commercialization and postmarket surveillance. “To understand patients, you must engage them,” said Boutin, executive VP and CEO of NHC, whose member organizations include nonprofit patient advocacy groups as well as life sciences and insurance companies. “When people with chronic conditions are involved in a meaningful way through the drug development continuum, we greatly increase the probability of producing the kinds of drugs patients want, need, and use,” he added.

David Verbraska, VP, worldwide public affairs and policy at Pfizer, agreed. “The patient perspective brings a universal truth to what we’re doing. Patients help define the unmet medical needs, value of the science, and the patient-reported outcomes and surrogate or direct clinical trial endpoints that should be used in a clinical trial,” he said. “By being patient-centric and adding transparency and interaction all along the R&D and market life cycle, patients help us achieve the best public health outcomes and avoid the worst-case scenario,” added Verbraska. The scenario: a drug that is approved by the FDA but does not meet patients’ needs. Through patient engagement throughout the R&D process, those needs would have been identified and addressed, he said.

Engaging patients in clinical trial design could help improve the study’s efficiency by boosting patient recruitment, protocol compliance, and retention. It also could help insure that the study generates the type of information that will be most important to patients. For example, although Parkinson’s disease impairs mobility, many patients have reported that they are more bothered by the impaired sleep patterns and depression that are associated with the neurological disorder. For these patients, a clinical trial of a new drug for Parkinson’s disease should evaluate the agent’s impact on these symptoms as well as mobility.

Pharma Guy's insight:

I discuss this topic with Anne C. Beal, M.D., MPH, Chief Patient Officer, Sanofi, and Melva T. Covington, MPH, MBA., PhD, Project Leader, Research and Development, Sanofi. They talk about their roles in bringing the patient perspective into Sanofi's work to advance Sanofi's ability to deliver health care solutions that matter most to patients and those who care for them. 

Podcast airs LIVE on: Friday, 20 March 2015 | 9:30 AM (Eastern US) 

Click here for more information and instructions for listening.

Jose Andrade's curator insight, March 10, 2015 10:10 AM

Engagement isn't far beyond just reach. Relevance, trust and continuity are far more important characteristics of engagement.