Posts tagged "patients"

It had been ages since I have experienced a real buster moment;  rolling healthcare, understanding and emotive awareness in one.

I saw this poster a little while ago at Maidenhead Station, took a photo to remind me to hunt around and I have finally got around to exploring more.

The associated film is a hard hitting view on Motor Neurone Disease,  has been banned from TV despite being one of the best eye openers I have seen. It seem a terrible shame when the reality of a disease is shelved for the public good.

Alongside this film and poster  the featured sufferer Sarah Ezekiel has a site showing life post diagnosis and provided me with a great example both of human spirit and inspiration.

Ian handed me a fascinating article on ‘Should patients be paid for taking their medication?’. (He also said it was high time I wrote a blog. )The story described a trial where patients with mental illness were paid £15 for each fortnightly visit to their clinic where they were administered their depot.

My immediate answer was to say, of course they bloody shouldn’t be paid! Treatments are prescribed to make people feel better and help them function in the world, surely that is incentive enough?

Hold on, I thought – it’s plainly not enough. Poor compliance is a fact of mental healthcare. It’s easy to speculate on why these patients would avoid their medication. We need to ask about the conversations they are having with their HCPs. Are professionals helping patients reach an informed decision about treatments?

Well, at least one survey says not really. Here, 59% of patients taking an antipsychotic reported that other treatment options had not been discussed. Almost two thirds said that they hadn’t been given written information prior to starting their medication. And 46% said hey hadn’t been warned about its potential side effects.

The NHS and HCPs need to look at the way they are engaging with patients. How many have read the NICE guidance on patient adherence and choice, published in January? And how is the NHS supporting them in implementing change?

Of course, it’s not easy for anyone. The befuddling thing about informed choice is that patients can refuse medication, and the professional’s obligation is to respect this decision. But what if the individual is antisocial, or a danger to self or others? Why are we paying these guys, really – what are the savings down the line? To make a judgment on this pilot, we need to know more about these patients other than that they are poor compliers.

If the scheme sees the light, bitter laughter will accompany jokes about kids being paid to go to school and likewise to adults for behaving on a night out. No-one’s going to like the idea of a pay-for-peace society. Whatever happens, let’s hope these patients get something positive out of it.

Our ever loving ears hearken once more to the digital pitter patter of patient empowerment.  UCB Pharma have partnered with patientslikeme.com to bring an Epilepsy community to the site.

Patientslikeme.com is a privately owned initiative that encourages patients to post details about themselves. This real world, outcome-based data is shared with individuals and organisations who work to improve health outcomes, including pharmaceutical companies, research organizations, and non-profits.

30% of epilepsy patients are refractory to treatment, so this move is good news for patients, HCPs and even competing Pharma. Over 37,000 patients are already registered on the site as well as 3,000 caregivers. Any epilepsy community should include the voice of caregivers, as a significant proportion of epilepsy sufferers are elderly or have learning disabilities.

Patientslikeme.com doesn’t just collect data from patients, it provides quality information and allows them to blog and communicate with peers. It’s a site that really does seem to have patients’ interest at heart. That’s why we like it – and so congratulate UCB for being a part.

A study conducted by a team of researchers at King’s College London has revealed that public understanding of basic anatomy is extremely poor, and has not improved in 40 years.

The researchers asked more than 700 people to look at outlines of both a male and female body and identify which of several shaded areas was a particular organ. The results are shocking. Less than half the respondents could correctly place the heart, while under one-third could place the lungs in their correct location. Interestingly, even those respondents for whom the organ had a relevance performed poorly – for example, more than half of those with renal problems did not correctly identify the location of the kidneys. These findings don’t exactly fit with the picture of the modern, tech-savvy, informed patient that lives in my head.

The researchers also said their findings raise concerns about doctor-patient communication. No shit. Try having a meaningful conversation with a quantum physicist about string theory, without knowing what strings are or where they live. I tried. It’s difficult. Especially when drunk.

And, with the introduction of patient choice in healthcare, concerns about health illiteracy are only become graver. Should Joe Public, who doesn’t know his prostate from his pancreas, really be at the helm when it comes to his healthcare? Would you let me, a copywriter, service your car? Didn’t think so.

This, by the way, is not an argument against patient choice. But, let’s get realistic. The patient needs advice, information and support before being able to take on the role of ‘healthcare chooser’. Or, at the very least, lessons in basic anatomy.

A report today by the BBC confirms what many of us have been expecting. The NHS has a big problem looming. Now I’m not an economist and my understanding of the financial levers required to prop up the economy in a downturn are pretty non existent, but I do understand what has happened before. Recessions hit tax revenues (less people working) and so the Government has less to spend. Even if we ignore all the other stuff like quantitative easing and budget deficits the simple fact remains, money is tight, and its going to get tighter. Add to this an ageing population, the threat of pandemic viruses and a grossly over-administered system the impact on the health service has no choice that to be considerable. Inevitably the spectre of large scale cost cutting, drug tariff pressure and even new drug prescription caps become the norm. There is no doubt in my mind that our industry and our clients business are in for difficult years as soon as the election is called. The policy maker the BBC interviewed called it 7 years of pain from 2011 . In my humble opinion the industry future requires us to be more innovate in the way we plan and launch new treatments, more cognisant of who needs to have meaningful relationships with medicines and more accommodating of the multiple layers of influence that will become normal. It’s true that innovation normally is more prevalent in crisis and whilst no one welcomes what is going on, I am confident that through adversity will come opportunity. We need to mirror the radical reform that our principal customer will undergo, recognise that doing what we have always done will not change anything and embrace the need for new thinking. Thankfully, that’s sort of why we set up…

In the city of Portland, Oregon, ‘Mrs. Smith’ has invited Intel Corp to equip her house and its contents with hi-tech sensors. These sensors map Mrs. Smith’s movements through her home, and measure her average stride length. They note the volume at which she speaks, and the amount of time it takes her to recognise her granddaughter on the telephone. They keep track of her nocturnal activity, including bathroom trips, midnight snacks, and ‘romantic encounters’. Urgh.

Researchers at Intel Corp will translate this data into a ‘behavioural baseline’ for Mrs. Smith. Any deviation from the norm could be a signal that something is amiss. Although research is at an early stage, it is hoped that the technology will eventually be able to recognise the patterns of behaviour that are characteristic of certain early-stage diseases, like Alzheimer’s.

It would currently take many years to determine if Mrs. Smith was developing dementia, and this technology shows promise to shorten this timeframe considerably. Early diagnosis translates into improved outcomes, and so intelligent houses may become an efficacious (although expensive) healthcare intervention. However, as with all nascent technology, many people are worried about the potential for abuse. You’d be worried too, if you’d seen Demon Seed.

I had a conversation with a man who works with us sometimes, Dan. He recently stopped smoking with the help of nicotine replacement therapy. I too have banished the need to smoke. I didn’t do it with NRT though – I tried that a few years ago and fell off the wagon too soon. I have also tried tablets, but misread the label and got the dosing wrong in the first week.

I was kidding myself both times. To tackle an addiction physiologically you need to be 100% committed. That’s tough, especially when you don’t feel all that addicted in the first place. Hence the behavioural support programmes that accompany smoking cessation products.

Maybe you think you enjoy smoking, but know that in the main you are insensibly compelled to do it. The truth is, cigarettes are nice, but so fiendishly addictive that most people develop a mutually abusive relationship with them. That’s when you notice the downsides.

When it’s time to get serious, call on the wise. Attend a reliable support group. NHS, Allen Carr, NRT support plans will help you make your decision.  Of course, simply attending these sessions/ reading the literature will remind you that smoking doesn’t do it for you. Not one cigarette nor a million will make you a better person.

It is a horrible, angry feeling, a ciggie craving. I experienced it for many years. Then I took a closer look. It’s not just a nicotine request. A craving is an unheard demand from childhood. It’s an oral fixation. It’s the left hand feeling left out when the right hand holds a drink. It’s a simple desire to tune out for ten minutes. A habit that shrinks as the weeks go on.

Of course, there are certain benefits to smoking. It gives you Time Out, staves off hunger, is proven to enhance short term memory, etc. Considering the price of being a smoker, I can do without those things. If you can’t, make a plan to compensate. 

Nobody should be surprised that obesity has overtaken smoking as a cause of death. Smoking is not a natural urge. Sleeping or eating is. Babies, rabbits, budgies, will all attack you for food. Light a fag and they scatter.

It’s okay to want to smoke a little bit, here and there. But if you’ve been addicted before, you must avoid forever. Keep reminding yourself of what makes sense, and you’ll be fine.

A couple of weekends ago Kathryn and I had the pleasure of attending an Epilepsy Action London Forum meeting at UCL. What we experienced was truly moving, a group of people with epilepsy willing to talk to us openly about their lives. This involved laughter, tears and then more laughter. What an amazing group of individuals.

Marie, who is the Regional Services Manager for the South East told us how difficult it was for her to find the space she needs to hold these meetings. After exchanging emails with her for a few days, she sent me this message:

“I am interested in the footnote to your email about a desk in London. We sometimes need meeting places in London for committees – 8-10 people for about 2hrs is this something that this message might apply to?  ”

I replied in the affirmative. We are now hosting three meetings for Epilepsy Action at our offices over the course of the year. We are pleased and proud to be getting something a little different out of our patient-centric ethic:  the chance to help people directly, even when we’re not at work!

Children with chronic disease often fail to adhere to prescribed treatment regimens, especially self-administered treatments. This is a significant challenge to overcome. Several cognitive and motivational processes are thought to influence adherence, including: (i) knowledge about the therapy and its relationship to health; (ii) perceptions of one’s ability to influence health outcomes (perceived control); and (iii) confidence in one’s ability to meet the demands of treatment and recovery (self-efficacy). This is true of both children and adults, although the specific barriers to adherence most likely differ depending on age. Children-specific interventions to improve adherence, in my experience, fail to engage. And engagement is a necessary component of effectiveness.
Therefore, I was pleasantly surprised when I stumbled across Re-Mission, a computer game designed to improve adherence to self-administered chemotherapy in children with cancer. In the game, players control a tiny robot, called ‘Roxxi’ (strangely attractive, see picture) within the body of a young cancer patient – the objective is to ensure that the virtual patients engage in self-care behaviours, such as taking oral chemotherapy to combat the cancer cells, taking antibiotics to fight infection, using relaxation techniques to reduce stress, and eating food to gain energy. The game is very playable, and there’s something intrinsically therapeutic about blasting the crap out of a malignant cancer cell, even for me

I know what the cynical among you are thinking, because I thought it to. Gimmick. And that’s why I was especially pleased to learn that Re-Mission had been evaluated in a peer-reviewed journal, and that the evaluation is positive. The conclusion? “The video-game intervention significantly improved treatment adherence and indicators of cancer-related self-efficacy and knowledge in adolescents and young adults who were undergoing cancer therapy. The findings support current efforts to develop effective video-game interventions for education and training in health care.“

Antiretroviral therapy (ART) can extend the lifespan of people living with HIV. Highly active versions of ART medications have even been shown to prevent progression to AIDS. However, these medications are only effective if they are taken as prescribed. Unfortunately, adherence to prescribed ART regimens is poor. The consequences of these poor adherence rates are significant – patients with HIV who have been non-adherent are more likely to progress to AIDS, even if adherence subsequently improves.

Non-adherence is complex and multi-determinant, and is frequently intentional amongst patients with HIV. Barriers to compliance that are consistently reported by patients include: “don’t understand treatment and/or suspicious of medication”. This suggests that a communication-based intervention designed to demystify HAART medications, i.e. to improve patients understanding of their medication and of the consequences of non-adherence, might improve adherence. Indeed, this has been shown to be the case. I believe any successful intervention will involve a significant component of peer-to-peer communication, as opposed to being reliant solely on doctor-disseminated materials. Communications technology is advancing at an unprecedented rate (see our twitter account), and the scope for peer-to-peer communications is massive.

Patient choice is a hot topic in healthcare, so it was interesting to review the latest clinical guideline from NICE: Medicines Adherence and Patient Choice 

Hive’s focus is patient-centric communication, but we don’t claim to have all the answers on the perplexity of patient choice. It’s a tough one for NICE too, who admit that there are gaps in evidence-based learnings. I picked up on a more basic disconnect – NICE’s policy is one of optimal Adherence, but it is Choice that underpins any behaviour. So, more patient choice infers that adherence is optional rather than optimal.

Patient choice embraces much more than adherence. How the two fit together might go like this: more honesty and understanding between doctors and patients leads to shared decisions about treatment. This increased choice translates into a prescription that is handed over with the mutual assurance that every item will be taken as prescribed. Less wasted medicines and consultation time, arguably better health outcomes for individuals.  

Can this happen when medicine and humans are an unpredictable mix? Not only do people respond differently to treatments, but our choices change from moment to moment. We try things, get a result, forget what it was that gave us that result, and start from the beginning. We’ve only our own bodies to give us feedback, and sometimes that feedback isn’t clear enough to justify repeated behaviour.  

Still, people like the sound of choice, at least in theory, and NICE outlines the many ways that doctors can improve at delivering that right. The guidelines are a step in the right direction, albeit a giant leap from current practice. Eyes will be rolling in surgeries at the thought of fitting more whys and hows into a standard consultation.

Of course, the real mental shift lies not with providers but with users. NICE has not yet issued patient guidelines on choice, and whether or not they do, every patient must find out for themselves what choice really means and how to play it out. I often politely accept a prescription knowing I’ll never fill it. I think I would be braver in talking to the doctor about this if I had proof that there is value in doing so.

 We need a bit of genius to get this right. Let’s teach kids about choice: how to visualise the results of actions, verbalise the decision and analyse the outcome. What else – any ideas?

The NHS constitution was today unveiled, two years after it was first suggested. The document sets out the rights and responsibilities of the patient. Critics have been quick to speak out against the constitution, claiming that it tells us nothing new.

The content itself may not be new – but the message it sends certainly is. Information on patients’ rights is of little value if it is hard to find and hard to read. This constitution aims to provide a ‘one stop shop’, where patients and NHS staff can easily access and understand the rights and responsibilities of the patient. It provides a foundation for true patient empowerment, by increasing the transparency of the system, and thus its accountability. It is an exciting step away from the traditional paternalistic doctor-patient relationship, towards a more sustainable and mutually satisfying partnership model.

But as Mike Sobanja of the NHS alliance points out “If it remains a piece of paper, it won’t help – action not words will bring it alive.”

Hear for yourself -  The R4 Today Programme with Alan Johnson.

Recently, I had the privilege of attending a conference where William Burns, CEO of Roche was speaking.

The thing I found most fascinating was his future view: “the patient of tomorrow will be in the driving seat”.

As he says, today’s patients research via the net to talk to other patients about which trials, medicines, doctors and hospitals might be best for them. They then make informed decisions and requests based on this and will argue with multiple gatekeepers to get there.

I’m interested to know other doctors views on this….Should an informed patient be feared or encouraged?

Although many people on this side of the Atlantic feel that the US Direct to Consumer advertising has taken things too far (and I would definitely agree) I do think there is more that should be done with Direct to Patient communication.

The internet is a great leveller given that everyone can put content on it, and increasingly acts as a first stop for many patients. But it does seem bizarre that in the UK, the pharma industry, who have access to the most information on products, are prevented from joining that discussion.

A couple of stats Mr Burns gave us made me think….

• 33% of the public use the internet prior to a doctor’s appointment
• 40% of the public will do so after a doctor’s appointment

Hopefully, the current EMEA debate on DTP communication will mean industry is more able to contribute in future.

Today is National Poetry Day, which aims to explore the relevance of verse in modern-day life. We love this poem by Elspeth Murray, which echoes our frustration at the complexity, jargon, irrelevance and clutter that litters much of communication today. Elspeth wrote the poem for the launch of the cancer information reference group SCAN (South East Scotland Cancer Network) in January 2006, which has been trying to improve the quality and speed of services for people with cancer. © Elspeth Murray.

Any healthcare industry observer knows that today’s patients participate more actively in decisions affecting their health than ever before. This is facilitated by a less stigmatised approach to personal health, and by the internet as the ‘premier’ source of healthcare opinion and information.

Aside from some downsides (see previous posts) , most of us see knowledge-empowerment as a promising impact on health outcomes. However, it’s unfortunate that EU citizens are restricted to gaining information online peer to peer (via discussion forums) or from company sites in unrestricted markets, such as the US. This information rarely represents local indications or local market conditions. As a result the patient reviews information that is not always relevant to them, with products that are not always available in their market.

The European pharmaceutical industry has become an outsider to this information exchange. They are legally liable for the products they produce, but prevented from providing a regulated information source to the concerned consumer.

Isn’t it about time that Pharma be recognised as important contributors to health information alongside healthcare professionals, patient groups and regulatory bodies?

The recent European Federation of Pharmaceutical Industries and Associations (EFPIA) call on policy makers to improve access of citizens to medical information seems sensible and long overdue.

The EFPIA have proposed 4 main information categories to clarify the discussion. Firstly, pro-active information, which is provided unsolicited to the public, should be limited to general information on diseases, e.g. covering awareness, prevention etc. but not mentioning specific medicines. Secondly, reference information, covering diseases and medicines, which is sought by patients as in a library, e.g. through the internet. Thirdly, reactive information on medicines in response to enquires received from patients. And finally, support information supplied to support compliance with a prescribed medicine.

The European Commission is also in the process of reviewing the current practice with regard to information to patients on medicines and plans to announce its findings in October 2008.

The European Commission fully supports that better information available to patients can contribute to achieving better health conditions, a more efficient use of resources and better adherence to treatments. And has further concerns over inequalities of information provision across EU members, and the lack of quality standards. In addition to this it also recognises that Member States authorities may not be in a position to fully address patients’ needs in terms of the substance of information and the access via different means.

It would appear that the EFPIA and the European Commission are on the right track and we could expect to see at least a recommendation of harmonisation across member states.

In the mean time consumers of medicines in the EU remain exposed to inaccurate information and at potential risk to their health.

Recently we have been working on a brief to improve the provision of information to people with massive mobility and dexterity challenges. We needed to communicate the product, how to use it in a way that is really useful, and most importantly why the choice has been made for them to be on this therapy.

Our initial discussions revealed that beyond who they might be and what they have been diagnosed with, little solid research in terms of their feelings or how they live with the disease was known. As a consequence we needed to get to grips with the patients, not only in terms of information requirements but also their idiosyncrasies and physical disabilities.

We wanted to use an approach that we have come to know as ‘Accessible Design’. This approach is huge with car designers in Japan, who need to feel how the rapidly aging population of Japan experience their cars. As young, progressive designers, they don’t have a problem getting into a car, adjusting seats, twiddling knobs – but the end user might. To combat this mismatch between audience and output Nissan invented the old-suit, an outfit which simulates the effects of aging. Strap it on and you’ll immediately feel stiffer, heavier, less able to balance, and the included goggles will make it harder to see. And its works – their design teams know, empathise and design better for an audience they do not relate to physically.

It’s obvious how this relates to the work we do. Patient materials are too often overlooked as bits of collateral that ticks the patient communication box but mean little to the actual user. While we create more relevant content for our audiences, really getting to grips with the problems they face and the questions they have, it’s essential to package this content appropriately. While product manufacturers make sure their goods are easily accessed, we must produce healthcare information in such a way as to be easily consumed.

Our conversations with patients and professionals unearthed difficulties we’d never have dreamed of (door knobs, envelopes, ring pulls, Velcro, shiny surfaces, stockings etc). Following an accessible design approach proved hilarious and humbling. With no Nissan suit budget in place, we had to get creative and find ways of ‘restricting ourselves’ based on the patient insights we had. Enter ski gloves, mittens, industrial strength elastic bands, bags on hands and training weights on arms. We played, we learned, we were astounded. The result is a range of materials that have been thoroughly tested as ‘end usable’. Alongside a better understanding of what they need and want to know we have solved the problems of this audience in a more relevant way, for a brand that can only benefit from this approach.

This project has been a real learning curve for us. We have looked at real end user requirements, translated this into design and content objectives, and injected these into our tactical material briefs. We have also gained useful insight into what it’s like to live a tiny period of time with a disability that impacts so much.

As far as we are aware this is the first time an accessible design approach has been used by a communications agency and that makes us totally happy. It’s an approach that is now an intrinsic part of our materials generation process.