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Social media and mobile apps: Bringing people and clinical trials together

Published on 10/11/16 at 11:11am

In part one, we looked at the difficulty in recruiting and retaining patients for clinical trials, and how increased communication between the pharmaceutical industry and patients can alleviate these issues. In the second part, Ben Hargreaves takes take a look at how social media and apps, as a leading form of communication in the digital age, can become part of the solution.

The common thread running through the discussions upon problems with patient recruitment and retention is one of communication. The line of communication to involvement in clinical trials by members of the public is the one issue that the pharmaceutical industry pours huge sums of money into. The older forms of communication, print, television and radio are still drawing patients to enrol in trials but their numbers lag behind the sheer number of trials being conducted worldwide.

According to the US National Institutes of Health, the number of registered worldwide clinical trials has increased from 1,856 in 2009 to 22,832 to date in 2016. This is a huge increase of 1,130% and so there is an equivalent need to find the patients necessary to fill such an increase. With such a requirement for a wider net to be cast, it seems strange that the industry has been slow to utilise the various opportunities available in a better connected world.

Taking advantage of a better connected world

This is not say that pharmaceutical companies and CRO’s (contact research organisations) have not attempted to utilise new avenues of communication but that the uptake has not been as drastic as the dramatic need. Tentative steps have been taken in the industry towards embracing the new forms of communication available with the advent of easy-access internet and new technology. Many companies have at least dallied with social media and increasing numbers are sporting their own apps on phones but the effort has been sporadic and extremely varied from company to company.

In terms of social media, Novartis have been one of the companies leading the charge in developing into social media and finding new ways of building relationships with the general public. Helen Townsend, Novartis international clinical research organisation manager, UK & ROI, speaking to Pharmafocus, acknowledged that the industry has been slow to move: “Social media is no doubt transforming the way in which we communicate, and as an industry, we need to be harnessing this more. Traditionally, the pharmaceutical industry has been a little hesitant of the do’s and don’t’s surrounding social media”.

There is a key point here that should not go unmissed, which is the wariness companies have of breaching guidelines. On ethical grounds, they cannot actively encourage the public to sign up to clinical studies and are therefore cautious about how setting up social media accounts that output communication upon clinical trials will be viewed by regulating agencies. With social media moving so quickly to the forefront of communications between people, it has taken the regulatory agencies time to update their guidelines. In a well-known example, Kim Kardashian promoted a brand of morning sickness tablets on Instagram that forced the FDA into action to bring the advert down for not including safety information. The company in question managed to raise millions of views for their product but got away with only a warning. It’s a regulatory minefield, both for companies and for the regulatory agencies.

It means that some companies prefer to tread a more cautious path and to choose not to spend much time pursuing this treacherous path. Speaking to Alun Pinnegar, senior clinical operations manager and country head, UK & Ireland, at AbbVie, he stated that “(social media) is a space largely or even entirely owned by the patient and academic community. The complexities of proactively engaging social media are so fraught with regulatory anxiety that it is yet to significantly contribute to trial delivery in the UK setting, at least for commercial trial sponsors”. His initial point also raises the question of whether people want to engage with companies on social media?

Do people want to engage with the pharmaceutical industry?

The problem with the question is that it can become circular. If pharmaceutical companies don’t have a presence on social media, then patients and the public don’t ever see related media from them, which then means the public don’t attempt to find related media. It’s a difficult problem, made more so by it being a grey area, in terms of what can and can’t be posted. Dr Doug Brown, head of research and development at Alzheimer’s Society, spoke to us about their online presence. He commented that “Social media has become a great platform for people – participants, the general public, and researchers – to share and discuss dementia research. However, we realise that not everyone enjoys using social media, so we encourage our researchers to talk about their work across multiple platforms, including newsletters and talks to ensure that our work is as accessible as possible.”

Alzheimer’s Society enters the debate from a slightly different angle than the pharmaceutical companies and does not necessarily have the same concerns. They have pursued this angle despite knowing that they will not reach everyone with such a tactic. However, their approach of incorporating all kinds of media to discuss their research has resulted in increased engagement - at present, they have over 137,000 followers on Twitter.

To return to Novartis, who have actively pursued the social media route, their current social media presence includes close to 200,000 followers on Twitter. This not only allows them to educate the public about their research but also their aims and successes. This reflects the fact that Helen Townsend spoke of having a team dedicated solely to social media, and, in taking this step, became one of the first pharmaceutical companies to relay information about clinical trials directly over Twitter. How successful this has been remains Novartis’ information but the fact it has been running for seven years suggests it may have achieved some success.

What is without question is the rise in the use of smartphones in communication and accessing online information. With roughly 2 billion users of smartphones in the world and their increasing use as the primary point of access to the internet - according to Ofcom, this became the case in the UK in 2015, with over a third of users using it as their primary device. Looking to the future, this is set to increase across the world and companies have now begun to diversify their smartphone portfolio beyond engaging with patients and customers on social media.

Finding a place for the smartphone app

There has been a rise in the development of smartphone apps due to an understanding of their importance for engaging and, potentially, helping the public. Pfizer, for example released an app called Moodivator, in September of this year, which helps those suffering from depression to track their mood and allows them to set goals to provide motivation. It’s an approach that has also been used to inform patients about potential trials, with Novartis releasing an app named ‘Clinical Trial Seek’ back in 2014. This method could prove to increase patient retention as, according to MediciGlobal, patients who approached CROs directly were 38% less likely to drop out and so having the easy availability of an app to sign up can only benefit both patients and the clinical trials they join.

As well as this, CROs have begun to experiment with the possibilities provided by Apple’s ResearchKit. Released on 14 April, 2015, Apple’s software framework allows medical researchers to quickly and effectively build research apps. It slimmed down the process of getting patients involved electronically, managing to secure 60,000 patients to sign up to clinical trials in the first few days of release. Celgene announced on 18 October that they planned to use the app to gather patient data in a real-world trial. In a statement, Michael Pehl, President, Hematology & Oncology for Celgene, stated that: "We stand at a point where technology is unlocking the ability to capture patient reported outcomes…Through our collaboration with Sage Bionetworks and the evolving capability of smartphones and wearables as robust data collection devices, we believe we will be able to provide important new insights for patients with MDS and beta-thalassemia.”

The opening sentence of the statement is key, in its recognition that a tipping point is being reached whereby the advance of technology can no longer be ignored, especially when it opens up so many exciting possibilities. The crucial element to using apps and social media is that it can be used as part of a wider strategy to engage patients. Once their attention is attracted, there arises the possibility to educate outside of the doctors’ office to increase awareness of trials. Within trials, if an app can be used by patients to document their symptoms and if it provides a direct way of providing feedback, it can only increase feelings of engagement with the study. AbbVie’s Alun Pinnegar identifies that this feeling of engagement is what makes patients stay on the trial: “Patients’ engagement in the study is crucial for retention which can be facilitated by the local study team with good follow-up to ensure they are still engaged with the study, the support of diary cards, appointment cards and newsletters, can all help in keeping the study in their mind”.

As Alun Pinnegar states, reminders are incredibly helpful to keep patients on track. And, moving away from the recent developments of social media and apps, there are more basic functions that can be utilised with the ubiquity of the smartphones in everyday life. Basic functions such SMS or email reminders to attend clinical trials can ensure that patients feel engaged.

Dr Cham Herath, a medical director at Chiesi Pharmaceutical, who previously worked on clinical trials with Roche, speaking to Pharmafocus commented that: “The use of SMS and email in retention is currently highly participant demographic specific. On the whole if the trial participants have a lower mean age they become highly useful. As the attributes of the older population change over time, we are finding that slowly even this group will utilise apps like WhatsApp (mainly to see photos of their grandchildren), especially now that a lot of NHS trusts and primary care practices utilise SMS to remind patients of upcoming appointments.”

Dr Cham Herath strikes an important point that has so far gone unmentioned in the piece so far: that of relevance to particular age demographics. Of course, as Herath points ou, older generations are beginning to adopt newer technology and this is a process that will increase with time. However, according to PewResearchCenter data from 2015, those using social media and apps across all platforms tend to be younger. The percentage of users per age group of Twitter, for example, works out at 32% of those aged from 18 to 29 and yet only 13% of people between the ages of 50 to 69 are users. It’s something to bear in mind when discussing the limitations of new technologies’ reach to patients.

The pitfalls of constant communication

This brings us onto a problem that social media does have and it’s linked directly to its reach: patients in clinical trials can very easily communicate with one another and this can cause headaches for those running the clinical trials. Dr Cham Herath has experienced the issues with social media first-hand: “On the whole it can help with recruitment but patients discuss their adverse events online, even when participating in a clinical study, this is especially true in therapy areas like HIV and viral hepatitis. These online peer to peer discussions have led to both to early discontinuations (due to fear of acquiring a side effect) [and] over reporting of a particular adverse effect (due to patients interpreting their own symptoms)”.

It is an issue that has been around since the World Wide Web became readily accessible to the general public. It allows patients who are understandably keen to be involved on the non-placebo side of the trial to find out, through the help of other patients, whether they are or are not being given the medication at the centre of the trial. This can lead to patients dropping out or causing unnecessary anxiety when reading about possible side-effects.

However, perhaps more importantly than this, communication between patients also provides those who are anxious or nervous a sense of support when undergoing a stressful trial, at a potentially extremely stressful period in their life. It would be ignorant to attempt to deny patients the right to discuss their experience but also, more than likely, futile. There are so many avenues of communication that it would be impossible for those running the trials to keep up.

What are the alternatives? Again, it is easiest to return to the topic of communication and the attempt to put the patient at the heart of this. Greater communication between those running the clinical trial can help to ease some of the anxieties that patients feel and facilitating communication between patients could also, if not negate, lessen the communication between patients.

When ‘patient centricity’ becomes more than a buzzword

A key part of this is the term ‘patient centricity’, which effectively describes itself – putting patients at the centre of decisions. If this is done, they can reduce any fears that may centre around trials by offering patients an alternative method of communicating with each other. Ideas that have been floated to provide this are relatively simple in execution. Online chatrooms or forums would provide an outlet for patients but, because they can hosted by those organising the clinical trials, they can then be moderated to ensure that sensitive information is prohibited or discouraged. The same applies for apps that allow patients to provide feedback – it provides patients with a service that there is a desire for, in allowing constant feedback, whilst allowing CROS to retain and use the information provided.

The feedback received from speaking to those working within the pharmaceutical industry and within research is that there has been a change within clinical trials. There have been concerted attempts to make clinical trials more engaging to patients and to place more importance on feedback. Alun Pinnegar, of AbbVie, commented that they have begun: “designing our studies to minimise patient burden with respect to number of clinic visits and procedures, we often get patients to give input into our study designs and we conduct end of trial surveys to get feedback from patients that we can build into our next studies.” While Helen Townsend, of Novartis, said that “We are already seeking input into the design of patient-informed consent forms and sending thank-you letters to participants. We also now share patient friendly result summaries at the end of our studies.”

Clearly there is now an acceptance that patient centricity has moved from being an industry buzzword to a core component that must be considered when developing trials. This has been something of a new shift and furthering this transition may be to acknowledge that social media campaigns and smartphone apps help raise awareness of clinical trials and can help patients then feel more involved in the process, which only aids retention. Dr Cham Herath identifies that “The advent of the patient friendly materials and final CSR, allows patients to feel included as part of wider study investigation team. However to ensure that there is equity for all patients, study co-ordinators need to be cognisant that they may need to provide support services, such as language translation, ultimately this does push study costs up.”

The extra costs must always be an issue to bear in mind. The cost of clinical trials has increased an incredible degree in the last decade alone and, with trials struggling to recruit and retain enough patients, it can feel like throwing more money at the issue may not be the right way to go about things. However, the costs are short-term but the potential benefits will extend long into the future. It is undoubtable that social media and smartphones will become an ever more central means of communication. As well as this, the younger generations of social media savvy individuals will grow older and they will become the most important demographic to which the pharmaceutical industry will have to engage to recruit in clinical trials. Technological development will continue to run ahead into the future, it’s up to the industries affected to choose whether they can afford to be left behind.

Ben Hargreaves

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