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Learning to trust the patient's voice

Published on 31/07/17 at 11:02am

Through digital media and technology, the patient’s voice is only growing in strength and it is of growing importance that pharmaceutical industry pays heed to what is being said. Ben Hargreaves reports on how developing partnerships is becoming increasingly common and integral to the way pharma interacts with its consumers.

People like to complain through social media. There must be something cathartic about the process because there are reams of people just waiting for an excuse to vent their anger about a range of issues. The latest research posited that complaints through social media directed at companies has risen to 15% of all complaints, and those complaining are reaping the reward; customers using social media outlets to express their frustration are being given an average of £32 to solve the problems or, more likely, to quieten them down.

Where do pharmaceutical companies come into this? Judging from Mylan, at the height of the EpiPen scandal towards the tail end of last year, the preferred response was to keep its head down and plod on with its humdrum messages of facts on its products and its commitment to patients. In some ways, it was quite admirable that it maintained its presence so regularly given the gales of derision and scorn that blasted through every message it ventured to post.

The importance of social media and, on a wider level, engaging with patients meant that Mylan could not suddenly retreat from social media – such an action would have only fanned the flames. It maintained its visible presence and continued on, knowing that the newest alternative furore or incomprehensible tweet by President Trump would deflect attention away.

If Mylan was prepared to keep up its social appearances, the question must be asked why. The answer is that the pharmaceutical industry is slowly realising the importance of social media, beyond establishing brand identity, to actively participate in a dialogue with patients. For instance, even during the height of the firestorm over EpiPen pricing, its twitter account continued to reply to customer or public queries.

This is not to suggest that this is the goal of social media but rather that constant engagement is now what is expected of companies. The digital platforms that most people use on a regular basis have created a baseline of expectation in how all companies will react to them. Uber disrupted the way in which people expected transportation services to perform, as well as providing an app that set a benchmark in user-friendliness and practicality. Once one user has experienced such a service, there is the assumption that all companies are, or should be, capable of providing a similar user-experience.

Riding the wave of patient centricity

For the pharmaceutical companies, in an industry known to be wary of revolutionary changes to a successful model, it has led to a slow awakening in the need to get on board with changes or risk being left behind. It should be noted that its collective wariness to broach social media and wider digital platforms comes from an understandable wariness to breach regulatory rules in their behaviour.

However, there is a growing awareness of the potential danger of avoiding ‘disruptive’ new technologies and approaches. Attend any pharmaceutical conference and there will, inevitably, be at least one discussion or talk that references the way in which digital start-ups are changing industries. Only last month, Amazon began hiring staff in attempt to break into the pharmacy market and is looking to recruit broadly to bring in employees from the pharmaceutical space. With Amazon now the go-to online store, consumers could easily be drawn into the convenience of use and this could have a huge impact on the pharmaceutical industry and its supply chain.

The reality of the situation is that, if consumers are unhappy with a service, they are accustomed to switching who they purchase from. A Gallup poll that looked at US citizens’ overall views of the pharmaceutical industry found that, through the years 2001-2015, consumers had a positive view of the industry in only three of those years. It has also consistently ranked in the lowest third of industries over the same period of time.

The industry has an image problem, and that’s not particularly news. The pricing scandals of last year, driven by Mylan’s EpiPen scandal and Martin Shkreli’s price gouging, have only furthered an existing problem. The industry is getting wise and is launching a fight back, primarily by PhRMA stressing the work that it does in R&D.

Innovative collaborations

Wider than this, the industry needs to really engage with its patients and more broadly with the public. As is often mentioned, it is now more often the public that chooses how they wish to be approached – slick apps, convenience of delivery and more direct engagement is key. Taking a lesson from this, Takeda has ticked a few boxes with its recent collaboration with Marvel. A pharmaceutical company pairing with a comic book creator might seem an odd partnership, but it is part of a wider movement to find alternative means to engage with the public and, crucially, its own patients.

The collaboration began a year ago, with the release of ‘The Unbeatables’ – a superhero story that centres around the difficulties people face when living with inflammatory bowel disease. Pharmafocus spoke to Elissa Johnsen, Head of Product and Pipeline Communications at Takeda Pharmaceuticals, to gain insight into why this particular approach was chosen to engage with the public.

Johnsen explained: “The concept of IBD Unmasked is insight-based, steeped in research and patient understanding. From market research that Takeda conducted, we found that people living with inflammatory bowel disease (IBD) see the disease as a struggle against an ‘intrusive enemy’. We also know that people with IBD are eager to connect with others who are going through the same experiences.

She continued: “While we listened to these people living with IBD, we were struck by their courage, perseverance and commitment to helping others in the IBD community. It occurred to us that we were among real-life Super Heroes.”

As Johnsen mentions, Takeda worked closely with patients to develop the ideas and themes behind the comic book. This means of working with patients allows them to get involved in projects that they can engage with, as well as providing patient insight into what is of most concern to themselves in their disease area.

Johnsen detailed how the experience had been beneficial to Takeda: “First and foremost, it allowed us – Takeda, as a company – to prioritise patients and revolutionise how we connect with them in a new and more organic way. It offers potential to make extraordinary headway in bringing IBD to the forefront of public awareness, helping patients advocate for themselves to get the individualised care they need.

“We also believe it will give Takeda an opportunity to drive global communications for and build long-term relationships with a community that needs and deserves more global and local awareness, connection and inspiration. We want to help patients believe that they can accomplish what they set their mind to – related to their care and in their daily lives – through differentiated, creative content and conversation.”

The association with Marvel is perhaps one of the more surprising elements of the campaign – with the company now more often associated with blockbuster films.

Mindy Hamilton, Marvel’s Senior Vice President, Global Partnerships, elaborated on its own interest in becoming involved in the project: “Marvel Custom Solutions has supported worthy causes using our characters in story-based narratives to educate and raise awareness on an array of subjects ranging from anti-bullying to early warning signs of diabetes. The Takeda IBD project presented some unique challenges though as we were creating brand new heroes and tackling a sensitive subject. We wanted to show heroes who live and deal with IBD on a daily basis.

“We weren’t using Iron Man, Spider-Man or the Avengers to tell our story but creating all new heroes in a completely new team. On top of that challenge was the message itself, as IBD is a disease that many people know little to nothing about. Having actual patients and doctors contribute their knowledge and experiences was the first step in our process as we needed their input before we could figure out how to approach this subject.”

There can be no argument that this project pushes patient engagement in a different direction, not least because of the wider draw of a company such as Marvel. Companies often focus on bringing interest or understanding to disease area in the knowledge that the more patient that are aware of the condition, the more patients may ask their doctor about it. It is for this reason that on the IBD Unmasked website there is a direct link to information provided by Takeda on its role within gastroenterology.

Making the most of tech

It is for exactly this reason that companies are now paying closer attention to the power of the website to bring patients in their direction. One particular area that has always proved difficult for the pharmaceutical industry is recruitment and retention within clinical trials. A lack of wider knowledge regarding trials by the general public has been linked to lower likelihood of participating by the Coalition for Clinical Trials.

In an effort to remedy this, several pharmaceutical companies have tried to make the process of finding and learning about available drug trials more readily available to the public. Eli Lilly, for example, has an online portal named Lilly Trial Guide which is able to identify trials by geographical location for its own clinical-stage drugs. This allows patients to effectively find a trial that is close by to where they live. The website provides four simple categories to choose from:

  • What is a clinical trial?
  • What should I know about participation?
  • What should I expect?
  • How do I find a trial?

Breaking down a complicated process into easily digestible chunks could remove some of the mystery and confusion regarding the process that gives more people a desire to participate.

However, though this could see recruitment improve, there is also the question of retention. Once again, effectively engaging with the patient is crucial and is an aspect that pharma is adapting to. Patients grouping together to create and participate in online support groups has been a growing movement since the internet allowed people to effectively communicate in communities – something which pharma is becoming conscious of by offering its own alternatives.

Wider than simply offering clinical trial support are the online communities that pharma companies are trying to foster in specific disease areas. Novartis has a reputation for being particularly proactive in the utilisation of social media and has created an online community specifically for heart failure patients and their carers. The website began in November of 2016, named ‘Together in HF’, and functions much like a social media network.

Fabrice Chouraqui, President of Novartis, said of the decision: “Our commitment to patients goes far beyond medicine, and we are proud to help launch this new, innovative social network for heart failure patients and their loved ones. Together in HF is a collective effort that brings together the expertise and resources of many organisations with a special focus on the unique social and emotional needs of people who are living with heart failure.”

The private network allows patients to interact with one another, and also to consult with health researchers and clinicians for any health-related worries they may have. The network is also accessible through an Apple and Android app, allowing participants to have access to their support network on the move.

Apps themselves have long been thought of as holding the potential to engage patients in their treatments, as ensuring adherence to medication is an issue of wider importance than simply clinical trials. The logical feedback loop of patients consistently using their medication – leading to improved health results and an increased willingness to maintain a strict regimen – is of high interest to companies dependent on drug sales.

The problem pharma has had is in knowing which direction to take apps and how to make them engaging to patients. Despite the companies having considerable budgets, it is an area of business that, at least until recently, was completely alien. This has meant certain app developers have been able to steal a march to develop their own apps that help patients manage their conditions.

One such company is mySugr (recently acquired by Roche), a company formed by people living with diabetes for people with diabetes – an insight that has proved invaluable in its app becoming the most popular diabetes app in the world, recently passing one million users. The popularity of the app led to a host of pharma companies willing to partner with them, including Sanofi, Novo Nordisk and, its eventual acquirer, Roche.

Pharmafocus spoke with Scott Johnson, Communications Lead at mySugr, to learn about the work they are doing and why it is proving to be of such interest to pharmaceutical companies. He explained the beginning on the company’s journey: “Our mission is to make diabetes suck less. And while the mySugr App is the heart of our service, you might consider it an integral piece of the bigger picture for what mySugr is all about. When we started in 2012, the focus was providing a beautiful experience for logging data (diabetes management requires pulling together lots of data from many different sources). At that time, connected devices were not widely available, so getting the data and providing a great experience along the way was vital. Today we integrate with many connected devices which provide a seamless experience and allows us to provide additional services such as personalized education and information, insulin calculations, coaching, and unlimited supply delivery.”

One of the major benefits of the device is that it is able to show immediate clinical benefits by working as a supplement to medication use. For example, in results posted earlier this year, mySugr was able to show that when those living with high-risk type 1 diabetes consistently used the app to log their medication usage, after a month participants were found to experience a mean drop in blood glucose levels by 20%.

Speaking on the results, Johnson commented that more work can be done to determine the benefits of the app: “The data has shown good results already, and we’re still in the early phases of exploring the clinical potential. In June of 2016, we recently partnered a clinical research organisation with strong diabetes expertise to help us take a closer look at what we’ve already done, what can be done better in the future, and how we can improve the diabetes ecosystem from an outcome and economic standpoint.”

The key for pharma companies looking to partner with mySugr is that not only does it display improvement in adherence but it can also allow them to work with the data that is produced by those using their products in real world settings. For Roche, that meant a partnership whereby it was able to sync its blood glucose meters with the app, improving adherence and improving data sharing to healthcare officials in one fell swoop.

Besides this, Johnson spoke about other partnerships that the company is working on: “We’ve been working on exciting collaborations with industry partners to deliver a better experience and will continue to do so. People with diabetes appreciate choice when it comes to the devices they use, and we want to integrate directly with as many as possible to eliminate any friction between the user and their data. Ideally, we would become a critical layer of abstraction that removes the concern about data from the user and provides everything they need for a healthy and confident life with diabetes.

“We also work closely with our partners to find creative ways to benefit people living with diabetes. For example, we’re working with Novo Nordisk on an educational campaign around postprandial glucose which fits nicely with the launch of its new ultra-rapid acting insulin.”

Identifying the key advantage that the company has in providing such specialised app development, Johnson commented: “We have a team of nearly 50 people at mySugr at present, focused entirely on diabetes in mobile health. Typically a pharma or device company in the diabetes space can’t dedicate a team of that size to their app or mobile platform, so partnering with us makes sense.”

The other great thing, not mentioned by Johnson, about pharma working with specialised app or tech companies outside of the industry is that there is a trust issue with content created from within. This is not an issue specific to pharma but across all industries where there is consumer mistrust of the reasons behind the provision of free content. A 2016 Syniverse survey found that 75% of respondents did not trust how brands would use their data garnered from mobile apps.

The power of the patient's voice

It means that the traditional big pharma approach of performing most tasks in-house is met by a double-bind – it wants to foster patient engagement because this has been shown to improve brand image and therefore consumer loyalty, yet its reputation presents a barrier between the consumers and itself, rendering this impossible.

The key choice is then to form more partnerships. One relationship that the industry has learned to develop over the years is with patient advocacy groups. It is a mutually beneficial relationship that occurs between a group that advocates more treatments in a particular disease area and an industry keen on developing new treatments to provide growth.

One area of disease that has grown exponentially over the last few decades is orphan/rare disease treatment. In reality, it is not one disease area but many different types of disease that have one linking factor – not many people suffer from them. Until the Orphan Disease Act was passed in the US in 1983, there were few treatment options available for those suffering from disease areas that affected small numbers of people – 30 years on, many more treatments options are available, but there is still work to be done.

Speaking to Valentina Bottarelli, Public Affairs Director & Head of European and International Advocacy, a patient-driven alliance of rare disease patient organisations, about its role in advocating for further development and access to patients, they explained the development of the organisation: “EURORDIS membership has gone from 187 patient organisations in 2000 to over 700 in 2017. The rare disease community has gone from having only two existing rare disease national alliances in 1997 when EURORDIS was created, to a network of nearly 50 national rare disease alliances around the world, including the 34 alliances that are members of the EURORDIS Council of National Alliances.

“By connecting patients and organisations through this network, their voices become stronger and cohesive. Over the last 20 years and through this network, animated by groups such as EURORDIS, the patient voice has grown in size and strength.”

The last point is particularly important: as the organisations have grouped together, the number of those involved has grown and such a combined voice has provided a greater power to call for treatments to be developed and then to smooth the journey through to patient access.

Bottarelli spoke of the power of this unified voice: “It is vital to ensure that the rare disease patients and their organisations speak with one voice. EURORDIS was created, among other reasons, to advocate for legislation on orphan medicines at an EU level.

“In 1999, the landmark EU Regulation on Orphan Medicinal Products came into place, introducing for the first time incentives for companies looking to develop orphan medicines. This is just one of numerous regulations and policy documents that EURORDIS has contributed to that directly contribute to the development of therapies for rare diseases. It followed the US Orphan Drug Act of 1983. Since then, over 130 medicines have been approved for rare diseases and over 1800 medicines have received an orphan designation, meaning the medicine benefits from market exclusivity.”

The last point mentioned is where pharma companies stand to benefit, as orphan drugs gain seven-year market exclusivity once approved and a potential 10-year period in the EU. This allows pharma companies an extended period of time to recoup R&D commitments made to developing treatments in such small population groups. The only question this raises is how the industry is now using rare diseases as a driver of growth, with orphan drugs sales reaching $114 billion in 2016 and it being one of the fastest growing areas of the industry. This has led to backlash over pricing of the treatments that have emerged.

This suggests that more work needs to be done on the part of the industry to cooperate and listen to patients. This has become an issue as rising prices of treatments have started to limit patient access, with healthcare systems struggling to afford the new treatments. Bottarelli advocates greater collaboration between all stakeholders: “The need is urgent for rare disease treatments and the challenges that come with meeting this need require a multi-stakeholder approach.  Pharma and biotech companies need to engage more with patients from the beginning and throughout the value chain of rare disease treatments: getting patient input to ensure that companies develop medicines based on what patients need, using patient-reported outcomes and patient-centred outcome measures, all the way through to ensuring that the medicine is accessible to patients. The EMA and European Commission offer useful tools such as scientific advice, which companies in the rare disease space should be aware of and take full advantage of. 

“In the framework of a collaborative approach of all concerned stakeholders, pharmaceutical companies have an essential role to play. EURORDIS proposes a comprehensive approach to patient access to innovative medicines based on early dialogue and European transparent cooperation framework between national healthcare systems for the determination of fair prices and of sustainable healthcare budget impacts across the EU – and on a continuum approach to evidence generation linked to healthcare budget spending.

“The EURORDIS Round Table of Companies (ERTC) was set up in 2004 to bring together companies with a common interest in rare diseases and orphan drug development. Through the ERTC, EURORDIS engages companies to work towards reaching the end goal of more and innovative rare disease medicines available to patients. Over the last 13 years, ERTC members have benefitted from taking part in constructive dialogue, facilitated by EURORDIS, involving patients, regulators and other experts. “

The effort on the part of EURORDIS to bring stakeholders together at the ERTC is integral to making sure that the industry engages with patients, and the wider public, in a way that ensures continued support for innovations in medical treatment of rare diseases.  As has been discussed, the pharma industry has suffered from a dip in reputation of late and working to interact more effectively with patients is key to building this back up.

Partnerships are the way forward for the industry, whether that be through creative projects, digital apps or the input of patient advocacy groups. The more influence that can be taken from these different approaches only serves to soften the industry’s image of being solely concerned with growth to incorporate wider interests. It is a process that is being learned, but it will need to develop at a faster rate if it is to mitigate damage from the broiling pricing debate and the murky behaviours in certain parts of the industry. Perhaps with greater engagement between the public and the industry, the former would be likely to forgive the odd business hiccup from a company – a potential hope that Mylan can only dream of at present.

Ben Hargreaves

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