“I’m a patient blogger”

“What’s that?”

If I had to summarise my 2 days at the eyeforpharma Patient Summit, it would be as follows:

The chance to hear from a group of people, intent on doing the right thing, displaying occasional flashes of brilliance, but needing help grounding in the reality of today’s patient life in a digital world.

I was fortunate to have been allowed to attend the conference on one of few ‘patient passes’, allocated to ensure that there was no conversation about patients, without patients; and in fact it was the refreshingly direct challenges from people with conditions as diverse as ataxia, lung cancer and diabetes to pharma in the midst of so much talk of ‘patient centricity’ that received the longest applause and the most attention:

“It should be compulsory for everyone to see a video about a patient’s day to day life for everyone in healthcare”

“Patients not being representative as an excuse for not involving them is the usual rubbish”

“I’m engaged and have educated myself. We want the same thing, let’s talk”

The frustration was palpable on both sides- some of us open-mouthed with surprise that you could get years and millions of pounds into developing a cancer drug without so much as speaking to a patient about the reality of life with their condition, or on their treatment; whilst those developing the drug felt constrained by regulation and focused on the needs of the ‘system’ rather than the people in it.

Much of the discussion centred on ways to involve and collaborate with patients in research and development of treatments, beyond their role as trial participants – in defining the outcomes we want, the experience we have during the trial. Positive steps, but patient was often interpreted as ‘patient advocacy group’  – the most well informed and ‘expert’ groups of patients; which is arguably not completely representative of ‘typical’ patients.

For me personally, the most poignant talks related to how to reach and engage the ‘typical’ patient. A presentation by medical writer, Lizzie Perdeaux, showed us startling statistics on how little most patients understand from what their doctors tell them or what is printed in leaflets and on websites about their diagnosis. From a coeliac perspective how will the 10-minute GP appointment or (if you’re lucky) one-off dietitian review hope to communicate the vast amount of information needed to optimally manage the diet and lifestyle changes needed for coeliac? Currently prescriptions of food likely mask the lack of health literacy among the patient population at large; something that doesn’t bring much hope when you consider the ongoing cuts to this provision. The local coeliac support group I manage is regularly peppered with the most basic of questions like “is corn gluten free?” or “can I eat this?” – showing that even basic survival skills (reading a food label) are not being acquired, with unknown impact on long-term health.

Typical guidance on medication – not easy to decipher. Now apply that to the complete lifestyle change you have to make for coeliac!

We are lucky in the UK to have an established coeliac group with comprehensive resources and education materials; but there is still lots to be desired in improving and ‘joining up’ care for coeliacs before, during diagnosis, and after in the nether-land you find yourself in once you’ve been handed the reigns. At the conference the Danish Kidney Society talked of how they led an initiative to map out the ideal patient experience, bringing in the pharma companies, regulators and health care providers. It highlighted gaps along the patient’s experience – some for everyone to address by developing products, services and resources.

The problem we have as coeliacs relying on a mish-mash of patient group, gluten free manufactures, primary and secondary care and a gloriously supportive and unstructured social media community is that it requires a somewhat geeky disposition and abundant time to navigate to figure out what you should be doing for the best to manage your disease. Each part of this picture has good intentions but their own motivations, and the whole experience is confusing and bewildering for many. If patients (and the patient group) took the lead to bring this together we might end up with something better and clearer for all of us.

For coeliac disease, NICE have recently launched new quality standards, but interactions with the health system are not even half the picture in the patient’s life; and that’s before you consider the NHS’ ability to deliver on it with their financial constraints. Industry (and to be frank, it’s money) definitely has a role to play. The major gap that did seem apparent from efp was in how companies can support patients after the treatment comes to market and is available for prescription. We are a little unusual as people with coeliac that our current best-available treatment (diet) bridges a divide between the healthcare and consumer worlds. With medical products ‘proper’, companies clearly feel constrained by regulation prohibiting promotion to patients – but with a genuine motive where’s the problem? If manufacturers really want to understand and see to the needs of their patients they will find we need more than just a prescription. If you are committed to working with us to design and deliver the other services we need to manage/treat our conditions and carry on with our lives, that won’t be a promotional tactic that will be a new product or service.

Cynical me wonders if the hesitation is rather because these organisations don’t see it as their role yet, and the services, apps and websites being built really are all about getting the prescription- to which I say ‘Break out! Think differently! Heck, if you do it right we’ll even pay you for it!” If current players don’t do it, young upstart companies will, but the existing players already have an advantage – knowing the market, the medical condition and the customers. Certainly with ongoing prescription cuts, the coeliac prescription manufacturers need to be looking for new sources of revenue.

What could that look like for coeliac? Find ways to figure out what’s wrong with me before I lose hope and trust in the medical system and develop serious complications; support me through that tricky emotional time when I’m adjusting to my diagnosis and treatment; help me track and manage my diet and figure out where I’m still getting slip ups. The wish list goes on of ways in which experts could make patients’ lives easier, and it would be all too achievable with today’s technologies and data if only the right people would work together. In every condition there are surely lots of unmet needs beyond the need for a pill that manufacturers can play a role in solving if they are truthful about wishing to be patient-centric. You don’t even need to hire a fancy market research agency to figure out what patients needed – a quick search on Twitter or YouTube will show you patients and carers already telling anyone who will listen.

But why should the companies at eyeforpharma bother? They just have to sell pills right? Well every one of the ideas I’ve suggested for my own condition would mean a healthier, happier patient, getting the right treatment; less time at the GP surgery; and ultimately less of a cost burden on the NHS – everyone involved wins. If manufacturers can help with delivering that, it’s got to end up in some happy customers – and everyone knows that happy customers say good things about you to their community, and are likely to buy more. “This company gets it” I sometimes say about companies who take the time to find out what we need and deliver good service. “I shall reward them with my custom and praise them to my friends”.

It’s just as true for a pill-maker as a supermarket: Tesco just have to sell food – but the fact that they’ve gone out and researched what products the free from community want, are hugely responsive and service-oriented on social media, and communicate what they are doing in a clear unambiguous way makes Free From their fastest growing (and award-winning) category – they could serve us adequately with rice, potatoes and crumbly gluten free bread; they figured out we’d also like icecream cones, cake and pastries to make coeliac kids feel normal at birthday parties – it might sound frivolous but it’s quality of life improvement that people are willing to pay for. Newsflash: your customer’s needs are a new market opportunity – just don’t think of their needs as only pills (or in this case, rubbish gluten free bread).

So what is a patient blogger? Well this one is someone who (contrary to the oft-heard refrain from the conference) isn’t an expert in her own condition (although I do know more than most), but is an expert in what it’s like for me to live with it; and I like talking with anyone who has an interest or expertise in my condition to make the whole experience of living with it better for all of us. With several new (pharmaceutical) treatments for coeliac in the pipeline and prescription cuts increasing, let’s hope this provides the impetus to rethink the whole patient experience, not just the basic needs and crisis moments.

Many thanks to eyeforpharma for the opportunity to attend – I found the conference to be very insightful, and hope that the patients involved we able to enrich the experience for the other attendees.