Tuesday, 30 April 2013 at the ABPI, London

Welcome and introduction

Mat Phillips, PM Society Patient Engagement Interest Group Lead

Introducing trust, reputation and social media in healthcare
There are several recent examples of issues arising within social media, for example clinical trial report transparency, where considerable online discussion by respected opinion leaders on platforms such as Twitter is going unanswered by pharma. Mat explained that there may be good reason for this, but that this meeting would aim to establish whether it really is the right approach.
Many in pharma consider social media to be a relatively small, even niche communication channel. However, it has a rapidly growing sphere of influence, including over traditional media. Increasingly, pharma needs to consider social media in the context of trust and reputation.  
Mat questioned whether the industry is left brain (academic) in an increasingly right brain (creative) world. He commented that nearly every company says that they have patients at heart in some way but asked whether this is genuinely true and whether this claim should be promoted so overtly. He suggested that maybe it is time for companies to be more introspective and reflective about patient engagement, with social media an element of this.
Concluding, Mat commented that two key issues at play are trust and reputation and the pharma industry’s reluctance to engage in open dialogue. 
To set the foundations for trust and reputation, Mat introduced  Dr Alex Wyke a known expert in the patient movement. He described her role at the meeting as giving some context to the trust and reputation piece. “Companies say ‘well no one listens to us anyway!’ and we can now see that this isn’t necessarily true,” Mat explained.

Trust and reputation – how patient groups view pharma

Dr Alex Wyke

Opening her session, Alex set the scene by emphasising why corporate reputation is important. She quoted a Harvard professor who says that ‘corporate reputation should be considered as much more than simply a brand emblem in the market place. Rather, it is a window to the fundamental character of a company and its leaders, and as such is relevant to all stakeholders…”
This is only one definition, she observed, but a good reputation is important for pharma. 
  • Strengthens negotiating positions with governments and other payers
  • Gives companies leverage with media and policymakers offering a competitive advantage
  • High-quality employees are easier to retain.
Alex claimed that there should be a virtuous loop where companies consider how they rank in terms of becoming patient centric – as measured by PatientView – and link this back into corporate strategy to see their rankings rise.
Patient views are important, she explained, because patient group numbers are rising, although membership is increasingly ‘virtual’. PatientView has a worldwide database which represents a drop in the ocean. 
The areas of advocacy and sphere of influence are wide-ranging.
“It is not about the patient going to the doctor to ask for drugs, it is about patients framing the environment in which we are all working,” Alex commented. “Increasingly, patients and others are forming alliances to leverage this environment.” 
“It is not about the patient going to the doctor to ask for drugs, it is about patients framing the environment in which we are all working”
Alex described a study by PatientView which is in its second year and is looking to track 29 leading pharma companies’ reputation over time according to a variety of indicators. The global study questions 600 international, national and regional patient groups and screens for pre-existing experience of a company and any working relationships in place. A UK subset looks at 12 leading UK pharma companies.
The study The Corporate Reputation of Pharma – the Patient Perspective defines corporate reputation as the extent to which pharmaceutical companies are meeting the expectations of patients and patient groups. 
PatientView consulted both industry and patients to find out how:
  • patient organisations rate pharma against other industries
  • pharma reputation has changed over the past five years
  • how good or bad pharma are at index activities including innovation, patient safety, fair pricing, acting with integrity
There are six yardsticks for rating individual pharma companies:
  1. Whether the company has an effective patient-centred strategy
  2. The quality of the information that the company provides to patients
  3. The company’s record on patient safety
  4. The usefulness to patient of the company’s products
  5. The company’s record of transparency with external stakeholders
  6. Whether the company acts with integrity.
Reporting top line findings, Alex explained that numbers reporting that pharma has an ‘excellent’ or ‘good’ reputation vary across countries, but that the UK comes out low with only 25 per cent of patient group respondents saying this.
In the UK, 40 per cent of respondents say that they believe pharma’s reputation has declined over the past year.
On company-specific findings, Pfizer, GSK and Roche come out top in the UK on overall rankings across all 6 indicators, but there are variations in the individual datasets.   
Alex concluded that there are three strategic recommendations coming out of these findings:
  1. Companies need to avoid being overly product-focused in their relations with patient groups and have a robust patient-centred strategy; they need to think of patients in a holistic fashion in the context of the whole picture not just one medication.
  2. Companies need to embrace patients and patient groups in any crisis management – in particular to go out to them at the same time as to the media so that they are fully informed, as they can be sensitive to bad news
  3. Companies need to be more accessible to patient group partners – often there is no clear point of contact
More information is available here.

Social media – insights from the front line in the not-for-profit section 

Bertie Bosrédon

Bertie Bosrédon has most experience in the not for profit sector and is a social media expert with a strong track record in patient organisations including the British Heart Foundation and, Breast Cancer Care.
Mat opened Bertie’s session by asking: “Does anyone here believe that their company is reasonably engaged with audiences from a social media perspective.”
The audience, representing over 30 pharma companies and agencies voted a unanimous ‘no’!
He explained that the usual excuse of challenges in moderating social media is a red herring although he acknowledges that it is not simple. He also highlighted how important is trust and reputation, reinforcing Alex’s previous comments. 
In particular, Mat observed, there is a strong role for social media in the context of safety issues. The Vioxx story came out just prior to meaningful social media, but he asked the audience to consider how it might play out today.
Bertie started by introducing his mother-in-law, who bought a laptop at the age of 61 and was down-loading digital photos, on google earth, blogging, skyping and teaching the grandchildren how to Skype within 10 days, he explained that she is not exceptional! 
There has been a real digital revolution. Bertie outlined his thoughts as to how it is evolving. At the start, digital was like a monarchy with the organisation pushing out information from its website. Then the evolution moved on to where every manager wanted their project on the front page. Slowly there has been a move to a democracy model – around the time when web 2.0 was launched – and users are involved in defining what they want to see. Social media is now integral to this and many conversations may be taking place outside your website and sometimes in platforms over which you have no control.
Conversations may be taking place outside your website
  • 91 per cent of adults now use social media
  • Facebook is the biggest and used by 68% of the UK population. Globally 37 per cent are aged 35-65 plus: it’s not just the young.
  • YouTube can also be considered social media – it is the biggest search engine and people spend an average 20 minutes looking at videos there, so it doesn’t have to be short!
  • Twitter has over 200 million users, with over 80  per cent accessing it via their mobile – websites must be mobile-responsive
  • Linked-In has 11 million users – smaller, but very important that an organisation has a presence there
  • Google + is gaining popularity with more than 3.5 million active users.
  • Vine, launched by twitter, is for 6 second videos. After three weeks it was seeing the upload of 2,324 videos/hour
  • Surprisingly, Yahoo Answers – which you might not even think of as social media – is bigger than Linked-In and Google. It needs consideration.
Digital first, digital by default, embedding digital in the DNA of the organisation – these are the current buzz words. An organisation which has really started to achieve this, ahead of the US even is the UK government. It has used open source software, been transparent in developing and issuing social media guidelines and stats on how the website is used. They have transformed the way that they are using digital.
So how to start adapting to social media? First, engage externally. You need to develop the digital face of your brand or organisation and Charity:Water is doing this very well, raising money to build wells in Africa. They feature interviews with people and partner companies. This prompts the viewer to see how they can become involved and in turn featured on the site.
Video clips can be an important tool in media relations too. At Breast Cancer Care, the clinical director was featured on video on the website at the same time that a media statement was issued. These are tools that can be used carefully. In an issues management situation, the preparation can be done and statements and videos posted on the web only if necessary. 
IMA is a good example of how transparency can work. The DMA Dashboard is even better. When the latter was introduced there were concerns that it would not work because people wouldn’t understand the figures. In fact, it has increased membership because people appreciated the transparency.
A dashboard is also a great way to publish an annual report, rather than the static pdf of the print version.
Managing the challenges
Bertie BosredonBreast Cancer Care has around 60,000 visitors a month to its forums and one post every four minutes. That is eight hours moderation a day and so a team of paid moderators and in place working from 7am to 10pm. 
They take a stepwise approach to managing the challenge. When someone is new to the forum they will be pre-moderated. Once a member has made four to five contributions then they move to the moderating group and are post-moderated and deleted in the event of an inappropriate comment or the member is put back in the moderating room.
Interestingly, in many cases, other users moderate the comments in their posts. They also often flag users who may be trying to return under a different user name.
MIND is a good example of a dedicated forum. It had a partnership with Facebook and people were starting to use the forum more for chat, which was not really its intention and it was not really suitable for such issues. They developed a breakaway site Elefriends.org.uk reflecting the ‘elephant in the room’ as a ‘safe place to listen, share and be heard.’
Family Lives is doing live online chats regularly and this is a good way to help patients online. Breast Cancer Care has also used this method for vertical subjects such as an HR specialist on employment issues associated with illness, travel insurance specialists, etc. Bertie suggested that this type of live chat might be Code-compliant if it were well defined in advance and facilitated and is a good way to ensure that patients have appropriate information. 
Mumsnet is good at partnership with charities - sharing content - and this might be a way for pharma to work with patient organisations. Charities have content and sometimes you could work with them by asking them to package some content for your website. So there are some partnerships that can be made.
The RNIB had a very interesting project which was funded and what they started to do was videos for their users about how to use online. 
CEOs of charities might also like to start using twitter. But beware! It is easy to spot the ones written by their PA. Train the CEO, not the PA. And have them seek out and engage with relevant others including politicians, NHS commissioners and peers, influencing through social media.
The internal culture
Silo working in patient organisations between the people who raise the money and the people who spend it is a barrier. You can’t divide the pot easily using social media and this is a learning. Change the internal culture – maybe by seeking out your existing digital champions through a staff survey. Issue guidelines (not policies) and train all staff. At Breast Cancer Care, Bertie reported that there was a weekly email talking about results and examples of how social media was used and an opportunity – if you want to tweet for the organisation these are four tweets we can all make next week.
There are also opportunities for internal communication. Chatter and Yammer are very similar to a private Facebook. Childs i Foundation uses Chatter every day to communicate with staff, supporters and partners to see their work by invitation. Amnesty International is doing the same thing with Yammer as its intranet platform. 
It is important to train all staff in a digital competencies framework, digital skills or literacy to get the knowledge outside of the digital schemes. Working with the HR team to accredit staff in digital and in so doing empower them to manage their own communication.
Listen, engage, measure
There are a few tools now to help you to listen, engage and measure social media.
  • Sprout Social - £26/ month
  • Hootsuite – pro version £6/month
  • Radian 6 – just for engaging – higher price
  • Hubspot – higher price.
Bertie explained that he uses hootsuite (pro). He recommends that you start with listening – having streams of groups that you can follow on lists. You can then post comments from Hootsuite, putting in keywords and starting to create feeds with specific keywords. 
Everyone has a Klout score, according to how often they tweet and their level of influence/ connections with influencers. You can choose to follow people who have a higher score.
A useful feature through google maps is to put a put a point on the map [geosearch], with a key word – for example, depression – and Hootsuite will allow you to look at all the tweets that have been made with the word in a distance radius from that point.  Then filter and filter further according to keywords to identify and target the most appropriate influencers.
Going beyond listening to start engaging, Hootsuite allows you to write the message and choose when you want it to appear and in which group, if applicable. This can be done in bulk pre-scheduled uploads if you choose. 
It is possible to create a company profile, different teams, etc.
With Google analytics it is possible already to see what journey people are taking from Facebook onto your website. Radian 6 offers the sentiment as well. However, Bertie observed that analytics are in their infancy and comparing different types of analytics you will see varying results. This is a new science.

Discussion and concluding comments

Mat Phillips

Mat led a lively discussion around aspects of the PatientView data and the potential for social media in pharma and particularly in relation to the way it engages with patients.
He observed that we are late adopters as an industry and think of obvious social platforms, but tend to forget that there are many more out there – for example Yahoo answers, where you might not necessarily know you are on a social platform.
Bertie provided context, explaining that social traffic really is a still small  percentage, say compared to search engines, but that it is a real presence and companies must adapt. If one organisation doesn’t adapt, others will.
Mat concluded that listening more than broadcasting is important. He observed that there are strict regulations in the sense of the PMCPA Code, but highlighted a comment that they are aiming not to be prescriptive in digital guidance and warned the audience to ‘be careful what you wish for’. Ethical engagement with audiences via any medium is likely to be Code compliant; it is disguised promotion that is the issue.


Bertie Bosrédon

Bertie has over 15 years experience in digital communications and has worked in the not-for-profit sector for 11 years. He set up the British Heart Foundation first online team and fundraising strategy, working on national campaigns before joining Breast Cancer Care, where he implemented innovative online services tools and an influential social media strategy.
Now working freelance, Bertie helps organisations develop their digital presence, find the right tool and tactics to connect with their audience, increase income and engagement.
He produces and presents a couple of podcasts: “Bertie Talks To The Leader”, a series of interviews of chief executives of voluntary organisations and The Guardian Voluntary Sector Network podcast. He also teaches web strategy and web design to 11-year-old children at his local primary school.

Alex Wyke

Alex Wyke is CEO and founder of PatientView, a UK-based research, publishing and consultancy group. PatientView has worked to build bridges worldwide with the health NGOs that comprise the patient movement, to help define and support one of the most important phenomenon changing healthcare in the 21st Century. Today PatientView has the capacity to reach out to 120,000 such groups (covering over 1,000 specialties, and from most countries in the world). The patient movement grows continually in numbers and scale of influence. 
From 1996 to 2000 Alex was responsible for creating and running the international healthcare publishing unit at The Economist Intelligence Unit. She was previously business and science correspondent for The Economist. Alex continues to write for The Economist Intelligence Unit. Her most recent publication being on The Future of Healthcare, which was published by the EIU in March 2011, and was sponsored by Janssen.
Alex was elected by the BBC in 1996 to participate in a small team assessing the Corporation's radio and TV coverage on science and technology. As well as lecturing, presenting and chairing healthcare forums worldwide , Alex also sits on the advisory board of the healthcare initiative of INSEAD management school Paris, and has worked for television and radio, appearing in an expert capacity on several programmes.
Alex has a PhD in biochemistry from St George's Medical School, London.