Those of you who follow me on Twitter will have seen that yesterday I attend the PM Society’s event on patient collaboration.  I found it a well put together event with a good balance of presenters from all the main stakeholder groups (perhaps with the exception of carers who were not represented).

The first presentation was from Jill Pearcy from the ABPI talking about the ABPI Sourcebook.  I was not surprised to hear that the Code is still being used as an excuse for not engaging with patients.  The reality is that this guidance should be seen for what it is: guidance on how to engage appropriately – not guidance on not engaging!  There is a huge need for industry to step up and start putting patients at the centre of everything they do and this can only happen with meaningful patient engagement and dialogue.

The same goes for the ABPI – something that Jill acknowledged. In order to update the Code – and keep it relevant and meaningful in today’s online world – the views and needs of patients must be included.  Trishna Bharadia, an MS patient advocate and speaker, made the important point though that when getting patient input it is important to not only talk to patient associations but also individual patients. 

As a patient advocate myself I could not agree more.  Personally I have never had any support from a patient association – in fact there is not a Hashimoto’s patient association, only Thyroid associations like the American Thyroid Association which cover everything from cancer to Postpartum Thyroiditis.  All of my support has come from individual patients through social media.  In fact if you look at the Hashimoto’s section of the ATA you will notice it only provides the most basic information – there is nothing about the impact of living with an autoimmune disease or how lifestyle and diet play a role.  Frankly there is next to no useful patient information there nor is it remotely engaging!  Looking at this I wonder how they could possibly provide a complete and meaningful contribution from a Hashimoto’s patients perspective.

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The next presenter, Dr Liz Clark,  came from pharma company Norgine, and gave a very impressive talk about some of the work she has been doing to drive patient engagement and patient centricity in the organisation.  Patient centricity is a buzz word that nearly every pharma company has somewhere on their homepage and yet the reality is so few pharma companies are truly patient centric.  My own experience in trying to work with teams around social media makes it painfully clear that the industry really is still very unsure how to communicate with patients.  The reality is that HCPs remain the main stakeholder – with huge teams dedicated to engaging with HCPs and then tiny patient advocacy and social media teams (social media teams often tend to lead the patient communication).

Fortunately this dynamic is changing and it was heartening to hear how this being done at Norgine.  I loved that they have had multiple patient days where patients were able to come into the office and just walk around and talk to whoever they wanted.  Liz gave the example of patients asking about the option of adding a QR code to packaging so they were taken to the packaging team to ask them directly.

She also made some fantastic points – one of my favourites being that hiring a patient advocacy team does not make a pharma company patient centric – but rather it is about instilling the ethos throughout the organisation.  Years ago I did a piece of analysis looking at how patient centric pharma companies were and one quote stuck with me – “without patients we would all be without a job”.

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Another pharma company that presented at the event was Boehringer Ingelheim with Annie Gilbert talking about the work her team has done around Scleroderma in terms of patient materials as well as trial input.  She talked about how they had learned from patients that their proposed website was not resonating with them – in part because it was using the wrong terminology.  This is an issue that IMHO should never have arisen anyway but is also quite typical of pharma.  Too often I have seen brand teams insist on using pharma speak and medical terminology, which whilst accurate may not actually reflect the terminology patients are using in the real world.

In Boehringer’s case they developed a website using the term Systemic sclerosis (SSc) – only to find out that patients never use this term.   I am certain a quick bit of social media listening would have revealed this fact long before – had the team done this at the beginning of the project (and then implemented the insights from this).

This blip aside however there was some great work that Annie presented – including how input from patients actually impacted trial design and protocol.  She also talked about how they had been proactive in communicating with patients throughout the trial, doing small things such as newsletters to keep them updated and informed, which they co-created with the patients, and sending patients birthday cards and then thank you letters.  These small human touches in part contributed to better patient retention – showing that patient centricity is not just the right thing to do ethically but it can also have a direct impact on results.

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Cancer Research UK also presented and talked about how pharma could work with them and other patient associations.  One clear message that came through was the need to be transparent and to genuinely care about patients.  It may seem obvious but it is not something that pharma organisations are always very good at bringing across – and transparency is definitely not an industry strong point for obvious reasons.

They also talked about the importance about thinking about the patients needs, and this was something that Trishna Bharadia mentioned in her talk.  It may seem obvious but the point made was that if you have patients suffering from fatigue do not expect them to be able to fly in for a workshop on an early morning flight and fly out again on the last flight at night – you will have to put them up for the night in a hotel.  And as an autoimmune patient I might add – if you do not understand the ramifications and impact of a disease, such as the fatigue autoimmune patients face, then ask a patient and work with them to get an idea of what is doable and what is not.  Frankly how can you expect to work and engage with patients in a particular disease area if you do not understand the basics of the disease from their point of view?

tweet 7Trishna’s talk in particular resonated with me.  She made a great point around compensating patients and the fact that patients are normal people with day jobs!  Patients are not charity workers and whilst many of us are extremely happy to be involved and share our experiences to help other patients that does not mean we are prepared to go out of pocket to do so.  If a patient has to take time off work to attend an advisory board they should be compensated – just as we compensate doctors for their time.  At the same time though do check with the patient – some for example may not be able to accept compensation due to local benefit regulations.

Trishna also made a great point that not all patients are the same and she categorised them into 3 groups – Patient by experience, Expert Patients and Pro Patients.  The first, and broadest group, are patients with the disease but who may not be experts in the disease.  The Expert patient is, as suggested, more of an expert around the disease within their own disease community.  The Pro patient goes further and covers beyond their own disease (rather like I cover autoimmune disease and not just Hashimoto’s).

She also reiterated the importance of working with patients from a place on sincerity and also of doing so early on and not just using patients to rubber stamp activities.  Another point that also resonated with me was the importance of getting senior leader buy in.  This is something that I have seen through my reverse mentoring.   As senior leaders start to understand social media, for example, they also start to get a better grasp of patients and their power, and hence the importance of putting our money where our mouth is (i.e. let’s not just talk about being patient centric but let’s actually live and breath it).

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The final presentation was by Dr Juhi Tandon who shared some rather depressing statistics on women and contraception – and the fact that this is a field that is still full of misconceptions.  Like most health issues in the UK a large problem is GPs’ lack of time and the financial pressure the NHS is under, resulting in disease topics like contraception not being properly explained to patients.  She has done some really interesting work in this field using VR as an education tool for women and so far has had great results.

I think health information is an area where we see the internet really have a huge impact.  Technology has the ability to step in where HCPs may not have the time – or knowledge – to provide more in-depth information to patients.  My own experience for example centres on all the lifestyle and dietary changes I needed to make for my Hashimoto’s – I got none of the information I needed from my doctors but rather other patients via social media.

A great deal of this information could be coming from the pharmaceutical industry but in order to provide it and drive impact it is vital to fully understand the patient and the patient landscape.  What terminology do patients use?  What issues do they face?  Where do patients go for information? What misinformation is out there and how can we combat it?  What tools could support patients? How can we better work with patients?

The sceptics out there who ask why do this should know that it drives outcomes and financial impact for pharma.  Better informed patients have been shown to be more adherent which in turn helps sales.  Better use of technology and a greater understanding of patients improves clinical trial recruitment and retention. More empowered patients can drive improved funding and drug access and approval.  All of these things have clear financial impact.

But IMHO just as important is the fact that as an industry working in healthcare we have an ethical obligation to do this.  Patients are not just money making machines to drive sales – they are human beings with needs and issues.  And just as patients need the industry to provide treatment and  solutions to their diseases we need patients to fund our jobs and industry and provide the insights we need to succeed in combating these diseases – it is a symbiotic relationship that we absolutely must respect.  Without each other we would all be worse off.



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