Member of the Month

PiF's membership is rich and diverse. There are representatives in hundreds of information producing organisations across the UK, working in every sector. They have a wealth of experience and skill. We thought it was time you heard from them, so every month we aim to highlight the work of one of PiF's members.

May 2012
Mikis Euripides, Policy and Patient Advocacy Manager, Merck Sharp & Dohme (MSD)

I'm the Policy and Patient Advocacy Manager at MSD. My role forms part of the Policy Team, which sits within the wider External Affairs Directorate.

My primary responsibility at MSD is to ensure we have a strategic approach to working with patient groups across all our therapy areas. Patient groups and MSD have many common interests and goals and, where appropriate, have the potential to achieve more for patients by working effectively together. The basis for the collaboration and any resulting initiatives should serve the interests of the patients whom the patient organisation represents. I also work on developing our therapy-specific policy ensuring we are aware of how government policies affect patients and our business.

I also work on specific projects that make sure MSD has the patient at the heart of what we do. An example is MSD's national health literacy programme. Health literacy refers to a person's level of ability to understand written information related to their health and wellbeing. This can include the instructions which accompany medicines, a leaflet on a health issue or even nutritional information on packaged foods.

The European Health Literacy Survey, conducted last year and supported by MSD Europe, provided first-time population data on health literacy levels in eight European countries. Worryingly, the survey revealed that almost half of all Europeans possess a limited or problematic level of health literacy. The study concluded that poor health literacy leads to poor health outcomes and inefficient health services due to ineffective communication between health professional and consumer, coupled with patients' inability to make informed decisions about their health.

MSD UK is supporting a forthcoming study by London South Bank University that will address the issue of poor health literacy in England. The Department of Health has already identified health literacy as a key part of their Health Inequalities strategy and we aim to support this strategy by raising awareness of health literacy through the survey and using its findings to drive improvement. Better health literacy can also provide people with the ability to participate in consultations with their GP on a much more equal footing, which suitably reflects the government's mantra, "no decisions about me, without me." The study will determine how far health literacy is a public health issue in this country and will identify at-risk and vulnerable groups within the population. We have learnt from the European Health Literacy Project that health inequalities can be a symptom of poor health literacy and we want to see health inequalities in England reduced. Health literacy is really important to MSD because improving health literacy levels both empowers patients, as well as leads to better health outcomes.

Since I joined MSD in 2010, I have managed a variety of projects. At the moment, I am managing the UK's involvement in an important global initiative called MSD for Mothers (Merck for Mothers in the US). This initiative supports UN Millennium Development Goal 5, which aims to reduce the current maternal mortality ratio by three quarters and achieve universal access to reproductive health by 2015.

Currently, the burden of maternal mortality falls most heavily on the developing world, with the vast majority of mothers dying in sub-Saharan Africa and South Asia. There are also communities affected by maternal mortality in the developed world, including in the UK, and MSD wants to improve maternal health outcomes here because we believe that no woman should die giving life. As part of the ongoing MSD for Mothers project, we are reaching out to organisations within the UK who share our vision. As many other countries celebrate Mother's Day in May, there will be a flurry of activity this month for MSD to engage with at an international level.

Before joining MSD, I worked at Asthma UK where I managed the charity's policy, public affairs and health promotion activities. Seven years and many public campaigns later, I have gained a true understanding of the power of the patient voice and the importance of health awareness campaigns. I thrive on being able to see a campaign succeed to shape national policy to the benefit of patients and the health and wellbeing of the general public. My role at MSD allows me to engage with and support other charities and patient group work and I enjoy the variety of work that this enables me to get involved with.

MSD has been a PiF member for several years and we have just renewed our membership for 2012. I value being a part of PiF's strong membership and I feel that PiF have brought together and established a solid community of like minded people. PiF's weekly email provides us with a valuable update on patient centric initiatives and it is a fantastic source of information. I make sure that I don't miss PiF's annual conferences because they are interesting and topical, and always have high profile speakers - MSD was lead sponsor for PiF's 2011 conference.

I am proud to be a PiF member and a part of the PiF community. It is our responsibility to remind people about the importance of good quality accessible information and to ensure that patients are empowered to make informed healthcare decisions.

April 2012
Sheila Brill, Director, Net.Mentor

You may be surprised to learn that not every PIF Member has healthcare at the heart of its business. However, in the case of Net.Mentor’s Peter and Sheila Brill, their heart is very much in the business of communication and PIF has played an important role in developing the company’s expertise.

As specialists in producing compelling content for the web, media and education, Net.Mentor was approached by a regional health provider to work on educational content as part of the government’s initiative to stimulate awareness of childhood obesity. Although the project itself was subject to funding cuts, it proved to be an early foray into the development of patient information standards. This brought Net.Mentor into contact with Mark Duman as he was beginning PIF’s formation process and Peter and Sheila have remained members ever since.

In fact, Net.Mentor’s background in Patient Information had been developing for some years prior to PiF and, in part, due to personal circumstances. Peter and Sheila’s first child was born profoundly disabled with cerebral palsy and cortical blindness. So, while pursuing a career in journalism and public relations, Peter’s parental experience also led him to becoming a Trustee of Sense – the Deafblind and Rubella Association – with a specialist role in communication. As well as the challenges of helping to develop a charity which focused on campaigning and residential and domiciliary care, for a highly challenged and challenging population in the UK, Sense also played a critical role in communication during the MMR debate. Peter worked closely with the organisation’s communications team and the Trustees to develop a strategy which made Sense the ‘go-to’ organisation for the media and wider public to find balanced, factual and non-judgemental information regarding MMR vaccinations.

Meanwhile, Sheila had stepped away from a career as a primary school and Advisory teacher to move into the publishing world. One of her first roles was with specialist publication, Therapy Weekly, which stimulated her professional interest in health and social care information. Her personal experience also led her to write and edited a wide range of content on disability and included the role of Managing Editor and a contributor to the specialist magazine “Information Exchange”, with an international readership of parents and professionals caring for and working with children with profound disabilities.

Formed in 2000 with an eye to taking Peter and Sheila’s communication skills to the burgeoning internet, Net.Mentor quickly attracted clients in the corporate and public sectors alike, including health and social care. While Sheila was developing expertise in converting traditional education into online learning content, Peter was developing a new website for Devon Partnership NHS Trust; working with Head Teachers and Deputy Heads of special schools in Bristol to create a leadership group; training health trusts and housing associations in media handling and crisis management and writing social care-related content for web and media.

Twelve years later, Peter and Sheila have created a reputation as content, publishing and online learning specialists for a wide range of clients. There are two collaborative projects they are most proud of. The first was e-learning development and marketing communications for one of the UK’s leading online training specialists for foster carers and adoptive parents of traumatised children and included developing a number of courses in subjects many of which related to abuse and mental health issues as well as developing relationships with national and specialist media correspondences.

Most recently, Net.Mentor project-managed the editorial process for the Society for Endocrinology’s ‘You and Your Hormones’ website. During the course of 2010 and 2011, Peter and Sheila worked with healthcare professionals and SfE to co-ordinate the production, editing and peer review of content about endocrine conditions, hormones and glands. A highly fulfilling project, it also reaffirmed Net.Mentor’s passion for meeting the challenge of producing high quality healthcare content for the public.

So where does the Patient Information Forum fit into the Net.Mentor CV? Without question, Peter and Sheila’s contact with PIF in general, and individual members such as Minervation’s Andre Tomlin and PiF’s Mark Duman in particular, has led to enhanced quality in their work in the health and social care sectors. Access to specialist knowledge and resources, a greater understanding of evidence-based information and the ability to seek opinions from health information professionals as ‘test drivers’ for content or learning activities has been invaluable.

Net.Mentor has also been able to apply its learning from PiF members to its content work in non-health sectors including the oil, nuclear and IT industries; e-learning in Business qualifications and even accountancy.

Most important of all, PiF has provided the Net.Mentor team with an opportunity to share its passion with likeminded professionals for making public communication and information, whatever the subject, the best it can possibly be.

www.net-mentor.com

March 2012
Jo Brodie, Science Information Officer, Diabetes UK

I’m one of three Science Information Officers at Diabetes UK working in the Library and Information Team, a job I’ve had since 2003 and one which I now do part-time (3 days a week) along with a second job, as Public Engagement Co-ordinator on the EPSRC-funded CHI+MED project.

My role involves supporting other teams at Diabetes UK who produce our information for people with diabetes and healthcare professionals. This can involve finding information or sourcing a more up-to-date reference for a piece of information we’ve used previously (and checking that the piece of information fits in with the totality of evidence for a topic). We also conduct literature searches and have a good dig around for information from a variety of sources. Occasionally we’re called on to put together a briefing document with top line statistical information on a topic for our Executive Team, and we’re responsible for the publication of our Key Statistics document. I and my colleagues also do plenty of that ‘behind-the-scenes’ library stuff of storing and tagging our information records so that we can find it again a year from now – which is often half the battle. When capturing information we have to give some thought not just to how it can best be used but also how we found the information in the first place.

Although the management of information often happens in the background it is a big part of what I do in my job. Along with my team I also train the rest of the organisation in how to use our intranet to manage all of our information (we use it simultaneously as a document management system as well as a communications tool).

Another of the tasks I share with my Library colleagues is providing a weekly current awareness bulletin for staff. We subscribe to a number of scientific, medical and charity journals and take it in turns to read the weekly intake, along with some online resources, and put together a document that covers the latest diabetes research, health policy issues and what’s been going on in the charity sector.

We also provide answers for (and sometimes directly respond to) the more scientific questions that come in from the public. Questions often arise because of something someone’s read in a newspaper or online and my job is to offer factual information, reassurance and occasionally to help someone get a more realistic perspective on a potential treatment. I particularly enjoy gathering evidence together, synthesising a ‘narrative’ and explaining the topic in what I hope is a clear way – while making it very clear that I’m not medically trained and that people should discuss any treatment options with their doctor or healthcare team.

Diabetes is a complex topic in which people have very different experiences of the condition and have different needs. The same person may also have different needs at different life stages, or at times when the way they’re managing their diabetes changes (eg taking new medication). The more we know about how the information that someone’s requesting from us will be used the more able we are to offer suggestions and alternatives.

Working in a small library in a medical research charity / patient group I’m keen to find out about the experiences of others working in related fields. Plenty of people are producing information, directly or indirectly, as we usually are, for patients and it’s a useful part of professional development (or even just professional maintenance) to hear others’ insights. I first heard of the Patient Information Forum through a former colleague who suggested I might find PiF a useful resource and that’s exactly what it’s proved to be. I really enjoy reading the weekly updates and quite often follow up on things on the website. It also broadens my outlook, keeping me in ambient contact with people who are producing information but from a non-charity perspective.

I’m already a member of a number of role-related networks such as the Association of British Science Writers (ABSW) and I have created a LinkedIn group specifically for charity science communicators but PiF lets me ‘zoom out’ and see a wider view of how we’re all putting science or health information together for the people who need it.

February 2012

Jane Archer, Cancer Care Centre Manager & Macmillan Patient Information Manager, York Teaching Hospitals NHS Foundation Trust

I hold two roles here within the York Teaching Hospitals NHS Foundation Trust. Firstly I am the Patient Information Manager for Cancer Services and alongside this I am also the Manager of the Cancer Care Centre. The Cancer Care Centre is a non-clinical supportive care setting that provides formal services and informal drop-in to support people’s holistic needs. We offer a benefits advisory service, complementary therapies (reiki, reflexology, aromatherapy massage and acupuncture), ‘Look Good…Feel Better’ monthly make-over sessions, hair loss support, cancer psychology counsellors, an information room, hold a range of support groups and we have a lounge area where families and patients can relax and have a drink, read the paper or chat – whatever they feel like. We are also an area that patients from the wards like to visit for some time away from their clinical setting. I have been in these two roles for almost two years now but immediately prior to this, was the Information and Support Manager for a Cancer Network. And, during this time was involved in early practice pilots and evolution of the electronic system with the National Cancer Action Team as a tool to deliver Information Prescriptions more widely within healthcare settings.

So, first to my role as Patient Information Manager within Cancer Services; the position focuses predominantly around the quality elements of patient information, by this I mean, governance policies and procedures, challenging accessibility and using pathway based models to ensure consistency with the goal of improving the whole experience for patients and their families. Much of my work is focussed around improvements that are directly linked to Peer Review and also to Cancer Network guidelines and accompanying clinical pathways. I also have responsibility for rolling out Information Prescriptions within Cancer Services here in the Trust.

I am heavily involved in patient experience work; through formal surveys, service user forums and also through spending time with families on a daily basis. Which brings me nicely onto my role as the Manager of the Cancer Care Centre. This, as I mentioned earlier, is a drop-in facility for anyone affected by cancer and is based within the hospital. We open weekdays from 9-4.30pm and occasionally evenings (according to support group schedules).

We pretty much deal with anything we are presented with each day – which may range from supporting a newly diagnosed patient and their family members to helping those who have lost a loved one; and pretty much everything in between. That’s what makes it interesting and rewarding.

My role as Manager is two-fold. In an operational capacity - dealing directly with enquiries and drop-ins and the practicalities of such a service alongside managing the environment, existing staff and services and also developing future services and making improvements for those who will, in the future be affected by a diagnosis.

I’m sometimes asked how I got into this job; well, I guess it goes back to my first ‘proper’ role in the NHS after graduation as a Health Promotion Officer within a Health Authority back in 1996/97. I developed an interest in cancer related workstreams back then. I took on an Information Co-ordinator’s role at St James’s University Hospital in Leeds at the end of 1999. I latterly managed the information and supportive care drop-in service within oncology and haematology services for adults and children. From here I moved into a position what was quite unique; it was entitled VIVA! Which fundamentally sought to develop arts based service improvements within clinical areas of the Trusts hospital sites – of which there were many!

During my career I have undertaken further role related postgraduate studies and gained additional qualifications in ‘Health Education & Promotion’, ‘Death Dying & Bereavement’ and at Masters level - ‘Health Information Services Management’. All of which have been financially supported by Macmillan through professional educational grants.

So where does PiF fit in with my working life? Their ethos and commitment to improving information for everyone fits snugly with my own personal views that everyone has the right to good quality information delivered appropriately and sensitively to allow them to make decisions that are right for them. And, professionally, PiF is a great resource, a relevant, reliable forum for issues that affect my working practice.

Unlike the gym membership… its one I won’t be giving up anytime soon!

January 2012

Danielle Swain, Director of Improvement, Picker Institute Europe

As Director of Improvement at Picker Institute Europe my primary role is to support healthcare organisations and health professionals in using patient and staff feedback to inform improvements and deliver patient- centred services. I joined PiF shortly after I began working for the Picker Institute Europe in 2002. PiF was recommended to me by Jane Wilson - one of PiF’s founding members. I am currently part of the advisory group and have been for a number of years.

Picker Institute Europe is a not-for-profit healthcare research organisation with headquarters in Oxford. The Institute specialises in measuring and improving the experiences of patients who receive healthcare and the staff who deliver it. Amongst our many areas of work we currently coordinate the English national NHS patient survey programme on behalf of the Care Quality Commission and the National NHS Staff survey programme for the Department of Health.

Our improvement work is delivered via educational resources, patient experience reviews, presentations, practical workshops, and tailored improvement programmes with teams of staff at all levels within organisations. Our approach is to involve staff and patients in identifying areas to focus efforts and in creating both practical and sustainable solutions.

The study of patient experience began in earnest through the interest of Harvey Picker, a US industrialist and philanthropist who made a lot of money in the design and manufacture of ultrasound machines. His wife Jean had a chronic and painful condition which meant frequent use of the healthcare system. Harvey observed that while the quality of the clinical service was excellent, the way that patients were treated as people was not. It distressed him that even as a wealthy man in the wealthiest country in the world, he was unable to secure treatment for his wife that regarded her as an individual person, not just a set of clinical conditions to be treated

He had an existing charitable foundation, and began using it to investigate the concept of more patient-centred healthcare. From the early 1990s, as the Picker Institute, it began to focus on how the experience of patients could be formally measured, in order to improve it.

Out of this work came patient experience questionnaires using the techniques of social science, known as the ‘Picker instruments’ – which are now used worldwide and which still form the basis of both the English and US national survey programmes

Much of the work of the Picker Institute focuses on improving patient’s experience of healthcare and our research consistently shows the importance of providing high quality and timely information for patients, carers and members of the public. This is a particularly important factor in insuring that patients are fully involved in decisions about their care and treatment. PiF’s work to support the improvement of health information links very closely with some of our own charitable objectives.

PiF provides a unique opportunity for networking with others involved in the field of patient information- members represent the entire spectrum of patient information producers and providers from the NHS, Voluntary, Public and Commercial sectors.

This network was particularly useful to me when I was coordinating health information research projects for the Department of Health. These studies were carried out to assess the quality of health information and access to health and social care information. With both projects the PiF membership were extremely responsive and also generous with their time by sharing examples of information and completing an online survey about their views and experiences.

Weekly updates via PiF Aware are also a great way of keeping up to date with relevant health information news and policy and a real benefit of membership.

Click here to contact Danielle.

December 2011

Kerren Davenport, Head of Editorial, HealthEd Ltd

I first started writing healthcare information when I worked in the medical information department of a large pharmaceutical company. My first offerings were text heavy documents summarising clinical trial data for healthcare professionals so that they could make informed decisions about a patient's treatment. My interaction with patients was limited to occasional phone calls about possible side effects of a medication, questions about how to use a particular device and even one from a worried pet owner whose dog had eaten her medication. Constrained by the ABPI Code of Practice, we were limited to the amount and type of information we could provide. Written information was generally quite vague and patients were always referred back to their doctor or pharmacist for more information.

My first eureka moment around providing healthcare information for patients and the public came when I was introduced to the Plain English Campaign, and their mission to 'rid the world of gobbledygook'. I loved the idea that technical information could and should be written in an easy-to-understand way. I eagerly threw away my thesaurus and quickly became the champion for plain English within the company, working through the standard response letters we held on file to gain Crystal Marks, the seal of approval from the Plain English Campaign.

For a few years I was happy in my ignorance that writing for patients was just about writing in plain English. It wasn't until I joined the editorial team at HealthEd that I realised that to produce effective patient materials you need to take into consideration not only the content and the way it is written but also the look and feel of a material, as well as how the patient will interact with it.

HealthEd produce a wide range of health education materials, not just for patients but for everyone who has an impact on the patient journey. These influencers and stakeholders include GPs, nurses, consultants, pharmacists, payers, patient organisations, as well as family, friends and carers. Within a very short time I realised that everything HealthEd produce is centred on the patient. Even materials designed for healthcare professionals are written to help ensure that the patient receives the best possible care and support they can. For example, counselling tools that are used by healthcare professionals to help explain healthcare problems and the importance of adhering to medication or formulary packs for payers to help ensure that patients can access the treatment they need.

Through years of experience, both here in the UK and in the US, HealthEd has developed a real insight into how patient's think, behave and act. However, each new project brings with it a new set of criteria and goals, and so for each new project we conduct new research. The editorial team work closely with our research team to discover, through a combination of desk, quantitative and qualitative research, what information is already available, what information is missing, what the end-user (eg patient, healthcare professional, member of the public) actually needs and what format will work best. It is only through conducting this research that we learn what end-users need, how they need it and how the information will be used.

Once we have established the characteristics of the end-user and their requirements we continue to work closely with them to develop patient-centric materials that achieve the goals set out by our clients (whether they are a pharmaceutical company or patient support organisation). At each stage of development the editorial and studio teams also adhere to HealthEd's Clear by Design™ principles. Clear by Design™ was developed by HealthEd to ensure that all of the materials that we produce, in particular those for patients, are health literate with regards to content, design, layout and interactivity. It is based on a number of health literacy guidelines and years of experience of producing healthcare information. Clear by Design™ is more than just a checklist it has become our ethos, particularly in editorial!
But even our very comprehensive Clear by Design™ checklist doesn't cover everything.

More recently we have realised that the HealthEd team has developed skills in producing materials for different audiences. Skills that have developed through the different projects we have worked on. For example, we recently produced information for patients and their families on tissue bank donation; an emotional issue that required sensitivity and compassion from the writer. We also recently produced a suite of materials to educate patients with learning disabilities about a potentially life-limiting condition. This not only required careful consideration from the editorial team with regards to wording but also great thought from our studio team with regards to design, layout and use of images. For each audience type certain principles have to be taken into consideration.
With this in mind, the next stage in our development for writing healthcare information is to produce a set of guidelines that takes into account both health literacy principles and the different requirements for different audiences.

I have found becoming a member of PiF extremely useful:

The weekly PiF newsletter, and more recently PiF tweets, keep me and my team up-to-date with patient issues and provide us with further ideas of how we can improve our patient communications
The annual conferences are an integral part of our calendar and through attendance we have developed our existing skills and learnt new ones
We work with patient support organisations, NHS trusts and pharmaceutical companies, and through networking with other PiF members we have developed valuable insight into how we can support each group, whilst also providing the best possible support to patients

On behalf of HealthEd I'd like to thank PiF members for sharing their materials, ideas and skills with us, and hope that we can return the favour soon. If you would like more information about how we support patients then please contact me. You can contact Kerren at k.davenport@healthed.co.uk or visit the HealthEd website

November 2011

Margaret Watson, Patient Information Manager, The Christie NHS Foundation Trust

I am the patient information manager at The Christie NHS Foundation Trust. The main site is in Withington, Manchester, with two recently opened satellite centres at Oldham and Salford in Greater Manchester providing radiotherapy services. Each site has a cancer information centre.

The Christie is a specialist cancer centre treating patients from all over the North West and beyond. The services available include chemotherapy, radiotherapy, specialist surgery and haematology as well as palliative and supportive care. This is primarily for cancer patients but also covers patients coming for endocrinology consultations and treatment in the nuclear medicine department. The Christie is also a specialised centre for the peritoneal tumour service. Over 40,000 patients are treated every year at The Christie and the centre is the largest of its kind in Europe.

My role is to produce high quality information for patients at The Christie. The information comes in a variety of formats and languages – booklets, leaflets, CDs and DVDs. I work as part of a small team with a patient information officer but we work closely with the information nurse specialists at the three information centres.

There is a wide range of Christie information – over 600 items. We aim to explain the treatments (chemotherapy, radiotherapy and surgery), so that patients can understand what to expect and, importantly, give their informed consent to treatment. Other information tells patients about all the services and support available such as specialist nursing services, diet and nutrition, physiotherapy, radiology services, how to get here and so on.

The information is distributed around The Christie sites at Withington, Oldham and Salford and also to the sixteen hospitals around the North West for Christie doctors to give to patients they see at local clinics.

There’s been a long commitment to patient information at The Christie so I have an annual budget and engagement from clinical staff. Nurse specialists, clinicians, dietitians, radiographers, AHPs, radiologists, ward nurses etc all participate by writing patient information wherever they see a need.

We have a centralised system for producing patient information at The Christie, so patient information comes to me for editing for Plain English and checking to see that the contents comply with various national guidelines, particularly, the NHS Litigation Authority. All information is monitored before publication by the Information Committee which is a multi-disciplinary group of clinicians, administrative staff and lay representatives. Our booklets are designed according to the Trust design template and the main treatment and support information booklets are typeset and printed professionally.

The information is distributed throughout wards, main departments and information centres at The Christie and radiotherapy centres using information link workers. Their role is to keep the display areas topped up with up-to-date booklets and leaflets and to share news about new or changed publications with their colleagues; this is additional role to their core jobs. Many of our publications are posted on the website for health professionals and members of the general public to access. Last year we had over one million page views.

This has been a busy year!

Information Standard: we achieved certification this year which involved a lot of preparatory work.
Chemotherapy review: we have over 160 chemotherapy regimen information sheets and these are reviewed every 3 years by the individual disease groups. This year we also had to ensure that each item was accompanied by an evidence file to comply with the Information Standard.
Information prescriptions Wave 1: we are currently working with the Macmillan Information Prescription Facilitator on this national project.
Manchester Learning Disability Partnership: we are working with the MLDP on a joint project to produce 3 illustrated booklets (having a CT scan; chemotherapy as an outpatient and chemotherapy as an inpatient) for people with learning disabilities.

The Christie is a dynamic and continually emerging organisation so there are many plans for expansion including a new Young Oncology Unit all of which have to be provided with information. The Christie is also currently consulting its stakeholders on the 20:20 vision strategy to find out what they think we should be doing in the future. Generally, the number of publications is growing all the time and information itself is getting longer and more complex so it’s a continual challenge to manage everything effectively and within budget. We are moving towards keeping documents in a simple A4 format rather than colour leaflets so that these can be posted on the intranet and downloaded easily.

I have been a member of PIF right from its beginning and have always found it genuinely useful and supportive to have contacts with others involved in producing patient information especially via the national and regional conferences and workshops. The weekly bulletins are invaluable for keeping up to date with national developments. I’ve used the PIF Query several times and it was really helpful to get advice from other members for Agenda for Change. It’s good to know that the organisation is continually taking forward the ‘patient information agenda’ at a national level.

October 2011

Kate Llewelyn, Head of Information Services, Arthritis Care and PIF Advisory Group member

After 15 years working in the patient information field, I am still excited by the challenges of developing information which helps people to make decisions about how to live with a long-term condition.

I was diagnosed with rheumatoid arthritis at the age of 13. I knew early on that I wanted to pursue a career which involved words. After studying history at university I found myself applying for a job at Arthritis Care because I was curious – I’d never met any other young people with arthritis before so I wanted to check the charity out. What I found was complete passion for helping people to live practically with their arthritis. I was hooked.

For those of you who don’t know, there are about 200 types of arthritis and it can affect people of any age. By getting diagnosed myself as a teenager I quickly had to adapt to a life of inflammation, immobility, frustration and pain. Aged 17, I had a Blue Badge (orange back then) and regularly got shouted at by adults because they didn’t believe I was disabled. People threatened to call the police on me at times. So, educating the public about what a horrible disease arthritis is became important to me from an early age.

While patient information is part of my role as head of information at Arthritis Care, I see the role can only be achieved effectively if you wrap information up into a whole communications package.

How people communicate and engage with charities and about their health is changing rapidly. We all need to keep up to date and anticipate new developments. I often find people tell me that older people don’t use the internet or technology. That’s rubbish and it really annoys me – my mother learnt to email at the age of 64 when she developed motor neurone disease and my 89-year-old father in law texts my husband at least four times a day. Technology can be a lifeline for people, whatever their age, if their health prevents them from getting out and about. Not just that, technology can be exciting – with apps and Wiis and everything, it’s a lot more fun these days.

Arthritis Care’s main focus is self-management and information underpins most of our services. We provide information and support through a number of means including printed booklets, factsheets, web, video diaries, online discussion forums, virtual groups and more. I have ambitions to do a whole lot more.

Our helplines team and our regional staff help us get the information to people and add that much valued personal touch. By engaging in conversation and support, people often engage with the information much more readily. A booklet on its own doesn’t change someone’s behaviour after all, but that human interaction – whether it’s from someone else living with arthritis, a nurse, rheumatologist or one of our helplines team – makes a vital difference.

I have a great team who look after all our editorial and production work as well as a colleague who ensures all our work reflects the most robust and up to date evidence. There is no typical day for me – expect the unexpected. As part of the communications team usually I will be involved in information development, campaigning issues that affect people with arthritis, media and communications work, social media, and managing partnerships and projects. Sometimes I feel all over the place but I am a Gemini so it appeals to me.

I am involved in the wider arthritis community. I am part of a group planning the patient programme element for the annual European League Against Rheumatology congress. This congress attracted over 18,000 people when it took place this year in London. It’s exciting helping to bring together clinicians, allied health professionals and people with arthritis to share experience, science and learning.

Recently I have been involved with the development of two patient decision aids for osteoarthritis which have now been launched as part of the Shared Decision Making programme. Previous work with the Department of Health has also included providing the patient perspective during the development of the Musculoskeletal Services Framework, piloting Information Prescriptions alongside Asthma UK, Diabetes UK and Hammersmith and Fulham PCT, and leading Arthritis Care through the establishment of the Information Standard.

I got involved in PIF a long time ago now after Mark Duman sought me out. When the opportunity to apply for the Advisory Group came along, I jumped at the chance. I find the role on the group stimulating – especially as the membership includes people from a range of sectors. PIF is great at keeping me informed about the policy issues which influence information – this has been exceptionally useful for the charity during this time of great change to our health system in England.

Managing a painful and disabling long-term condition while working full time can be a challenge. I have to drive to work as I can’t use the Tube at rush hour, I work from home when I can and generally listen to the warning signs from my body. Outside of work, food is a great passion of mine. Since going on to some newer heavy duty drugs for my arthritis, I have been able to rediscover my love for cooking. My husband makes a great sous-chef and although I know washing up is good therapy for my painful hands, I’d much rather leave it to him! In recent years I’ve finally accepted how beneficial exercise is for the mind as well as the body. I love Power Plates and am keen to take up pilates.

And apart from that, my two cats Ruby and Boo keep me entertained with their antics and general madness. Very therapeutic after a long day.

You can contact Kate at: KateL@arthritiscare.org.uk
www.arthritiscare.org.uk

September 2011

Dr Leona O’Reilly, CEO Nutrition and Diet Resources UK

I lead and manage Nutrition and Diet Resources UK (NDR-UK), a diet and nutrition information service for you by dietitians. NDR-UK works in partnership with dietitians (and other health and social care professionals) to produce evidence-based, peer and patient reviewed, cost-effective resources that are free from commercial bias for health professionals to use in consultations with patients and the public.

We have over 235 resource titles covering approximately 40 different disease states. The information is for health professionals to use with patients and the public during consultations. All the resources focus on how diet and nutrition can help prevent, treat and/or manage a disease and covers everything from Diet and Constipation to Diet and Renal Disease.

It has taken a long time for NDR-UK to get where it is today. What started out as small project [Scottish Diet Sheet Initiative 1980-1993, Scottish Nutrition and Diet Resources Initiative 1993-2011] has been transformed into a UK charitable organisation, with a vision to become the recognised producer of diet and nutrition information.

A team of five manage daily operations. This includes myself, Lisa Kavanagh – Marketing Officer, Kirsty Rice – Project Officer, Marie Byrne – Clerical Assistant and Mary Laidlaw – Professional Dietetic Advisor.

Why are quality diet and nutrition resources important?
Diet and nutrition resources are the tools of the trade for dietitians, as they rely on these to support their consultations. In particular this profession recognises the impact of poor versus high quality information and the subsequent effect that the latter can have on behaviour and health changes. These tools are also an essential component of any strategy to promote health literacy, self-care, choice, shared decision-making, medication and self-management of chronic diseases. They improve patient involvement in healthcare, as quality information empowers people to make choices that are right for them. A lack of appropriate health information or a lack of explanation of health information, on the other hand, at best creates uncertainty and at worst may pose significant risks to patients and the public.

‘As with lots of Dietetic Departments across the UK cuts have been made in the Salford area. I had to rethink how I could continue to deliver our dietetic service effectively and efficiently. An area I decided to re-design was the development and publication of patient dietary information. This activity was cost intensive, especially from a human resource perspective, and we found it difficult as a department to keep on top of the quality processes and procedures. NDR-UK provided the answer as I decided to use only outsourced information to give to patients. Their resources are excellent dietetic tools, developed using a robust production system, providing quality assured diet and nutrition information and are available as and when I need them. One year on and dietitians can spend more time in consultation with patients, our referral capacity has increased, our waiting lists are down and I have made significant cost savings! Patients like the way the information is presented, find it easy to follow and are engaging more effectively with advice’ - Diane Green, Head of Dietetic Service, Salford Royal NHS Foundation Trust.

Throughout all the changes there has been one constant to which I am forever indebted – PiF. PiF has always been on hand to guide me on matters relating to consumer health information and to share experiences and provide training. Last year I took on the role of Scottish representative as I wanted to get involved with a leading national organisation driving forward the case for consumer health information.

Throughout all the changes there has been one constant to which I am forever indebted – PiF. PiF has always been on hand to guide me on matters relating to consumer health information and to share experiences and provide training.

This year I am delighted that PiF have invested time and energy in delivering a conference on The Rise of Consumer Health Information in Scotland. This is a first of its kind for Scotland and will take place on the 4th October 2011 in Glasgow. Topic highlights include:

the context for the rise of consumer health information in Scotland
opportunities to learn about shared decision making and how to implement it
insights on how accessibility and health literacy impact consumer health information
the evidence for investing in better consumer health information.

I am really looking forward to the event and hope to meet many more PiF members there, but hurry as places are booking up fast! If you have enjoyed this read and want to get more involved in consumer health information in Scotland or have ideas that you’d like to share, then please get in touch. Contact Leona at leona.oreilly@ndr-uk.org

More information on us can be found at www.ndr-uk.org

July 2011

Sol Mead, Chair of the Academy of Medical Royal Colleges Patient Liaison Group

As Chair of the Academy of Medical Royal Colleges Liaison Group(APLG), I am the only lay member on the Academy’s Governing body which consists of the Presidents of each of the Royal College and Faculties. I am also the lay member on the Academy's Education, Revalidation and Clinical Leads Committees. My route to Chair of the APLG (which is made up of the Chairs of the individual College/Faculty Patient and Lay Groups) began in 2006 when I was appointed as a lay representative on the Royal College of Radiologists(RCR)Clinical Oncology Patients Liaison Group(COPLG). To become a member of that Group you have to be a cancer patient or a cancer patient carer.

The Academy ( aomrc.org.uk ) is an important networking body with an authoritative voice bringing together the representatives from across of the twenty individual Royal Colleges and Faculties within the clinical profession, from across the UK. The role of the Academy is to be a forum to develop a common view on medical matters across all the Royal Colleges which can be presented to the Department of Health, the General Medical Council etc. The Academy also has a policy development role in the training and education of doctors. It also expresses views on many different health policy issues such as the quality and value of hospital data; the growing use of Telemedicine; the development of NICE standards and more recently expressing a range of concerns about the Government’s health service reorganisation plans. It is also deeply involved in the process of setting up the revalidation structures which will apply to doctors from 2012

Most Royal Colleges/Faculties have patient involvement committees with different titles e.g. Patient Liaison Groups, Consumer Forum, Patient Partnership Groups. The majority representation on these Groups are patient/lay/carers plus College clinicians. The main aim of these Groups is to facilitate direct patient/clinician discussion on topics linked to the treatment pathway within which the College clinicians practice. The Groups also provide lay/patient representation on College education committees with input into curricula and exams They also put representatives onto other internal/external committees thereby ensuring patient /lay input across the spectrum of health service issues. The APLG and College Groups provide a patients voice in discussion and debate so that policy development comes from a clinician and a patient point of view

I first became aware of PiF in 2008 when I became Chair of COPLG when the RCR decided that it was an information facility that I needed in that role. Since then it has become invaluable to me as Chair of the APLG providing wide ranging (and up to date) information on what is happening not only across the UK Health Service, but also internationally.

The ability to collect/ disseminate health service information has, for individual patients and patients organisations, become an essential tool in daily life. It's a major break from the past where the availability of information was limited and often kept in silos controlled by the medical profession. This has to be seen as a welcome change; information about every aspect of different types of treatment is now easily available to clinicians and patients which leads to a more equal understanding when making health related decisions.

Royal Colleges and Faculties websites are good information sources and contain material often produced jointly with patients groups. Some good examples include:

Information on Anaethesia for Children and Young People (Royal College of Anaethetists)
Patient Information on Paediatric Eye Conditions (Royal College of Ophthalmologists)
On line Virtual Oncology and Radiology departments plus publications for health professionals on making chemotherapy or radiotherapy departments patient friendly (Royal College of Radiologists)
End of Life Charter for Patients or Information Leaflet for Patients on Revalidation (Royal College of GPs )

For easy access to the College websites go to the Academy website and click on Members. This provides a link to each College website, which contain not only information for patients but also general reports on many different health issues.

Click here to contact Sol Mead

June 2011

Denis Welch, Managing Director, InTime Data Ltd

InTime Data was founded by myself and a group of like-minded individuals in April 2002. The entire group had a pharmaceutical or NHS backgrounds and we felt that we could bring a different approach to patient/doctor/pharma communications. Over time our focus shifted so we now concentrate on trying to improve communication between Patients and the NHS.

My interest in patient information came about during my seventeen years in the pharmaceutical industry. During this time I was always frustrated, puzzled and saddened by the rift between pharmaceutical industry and their audience. Suspicion abounded on both sides, things are little better now. Most lay people are unaware that pharmaceutical companies are (for good reason) not allowed to advertise directly to customers. Any sort of communication is extremely limited and patients find it equally difficult to contact the companies, who bound by masses of red tape, are understandably cautious when contacted. As a result pharmaceutical companies remain mysterious and almost unseen by the patients they look to serve. Thus patients rely almost solely on doctors for the treatment and advice.

I became more convinced that patients’ opinions and their right to access the right information was of prime importance during my next career. This role involved researching both doctors and patients opinions about current and developing treatments. The contrast in hopes and fears, expectations and aspirations was fascinating. Patients did not expect a panacea; doctors were always (quite rightly) looking for one. Doctors understandably had assumed the position that they knew what was best for the patient. These experiences shaped InTime’s philosophy; that when it comes to patient / physician communication (outside of the normal consultation) there needs to be a neutral interface between the two. We believe that one of the major issues in patient to physician communication is that physicians believe that they know what patients want and need and they ask questions accordingly. This isn’t surprising; it happens with every profession we have ever worked with.

When asking any audience for their opinions, organisations fall into the same trap time and again. Questions are posed the answers to which are already known. These fall into the “safe” and “reinforcing” categories. Procedures, communications and methods are confirmed as working and popular when what one really needs to know is maybe “unwelcome”, “surprising” even “hurtful”.

InTime Data joined the Patient Information Forum as we felt we could help organisations make a difference to their members’ lives. We believe that by providing the expertise, the guidance and the platform for patients and patient groups to ask questions that patients, carers and physicians need to know the answers to, we can help other members of the Patient Information Forum achieve their goals -to make a difference.

The latest developments in England with the shift of focus to a patient-centric NHS provide an opportunity for patients to express their opinions like never before. The new DES aims to promote the proactive engagement of patients through the use of effective Patient Reference Groups (PRGs) and to seek views from practice patients through the use of a local patient survey. The key requirements of the patient participation arrangements agreed by negotiators are that GP practices must:

develop a structure that gains the views of patients and enables the practice to obtain feedback from the practice population
agree areas of priority with their PRG;
collate patient views through the use of a patient survey;
provide the PRG with an opportunity to discuss survey findings and reach agreement with the PRG on changes to services;
agree action plan with PRG and seek PRG agreement to implementing changes;

All of the above provide patients with an unique opportunity to influence the way that their healthcare is delivered and it is one that they must not miss. It is precisely in this area that InTime Data can provide a valuable service. Over the last 7 years InTime have surveyed over 600,000 patients across some of the largest Primary Care Trusts in England and Local Health Boards in Wales. InTime is one of the UK’s largest GPAQ (General Practice Assessment Questionnaire) Survey operators and are one of the NPCRDC’s original licensees. We can print, collect the data, analyse and produce reports within 2 weeks. We are able to produce bespoke, flexible reports, compared with national or local benchmarks. We don’t just run GPAQ surveys, we have an extensive skills set and expertise to ensure clients get the most from surveys; from the design of the questionnaires, printing and delivery of the survey, right through the accurate analysis and clear delivery of data.

If you wish to talk to us about how we can help your patients gain the knowledge they need then contact Denis Welch at denisw@intimedata.com

May 2011

Dr Aniruddha Malpani, Medical Director, HELP – Health Education Library for People, Mumbai, India

HELP – the Health Education Library for People, India’s first Consumer Health Education Resource Center, and one of the world’s largest consumer health libraries (as determined by the Medical Library Association , USA ) was established in 1997 to empower people by providing them with the information they need to promote their health , and prevent and treat medical problems in the family in partnership with their doctor. We are a registered charitable trust and a non-profit organization.

We offer the following facilities:

Air-conditioned reading rooms, with a seating capacity for 20-25 people; an up-to-date collection of over 9000 consumer health books, 10000 pamphlets, and many magazines and newsletters; 600 DVDs which can be viewed in privacy in the library; and a lecture hall (with a seating capacity of over 70 people) with a big-screen projector which we give free to NGOs for health talks. We host Health Talks daily by leading doctors, in partnership with the Times Foundation. This is India’s longest series of Health Talks (as determined by the Limca Book of Records).

We have access to information on every health and medical topic under the sun – explained in terms which the layperson can understand.

HELP has become a prototype of the modern digital library. Our website at http://www.healthlibrary.com is India’s leading health portal, and receives over half a million hits a month! We are a public library – everyone is welcome! Entry to HELP is free! We are open Monday through Saturday, from 10 am to 6.30 pm. For those unable to come personally to the library, we also answer questions by post or e-mail. This is an innovative service called MISS-HELP (Medical Information Search Services from HELP ) which allows us to provide medical information to users from all over India .

We feel patients are the largest untapped healthcare resource and that Information Therapy is Powerful Medicine!

We help patients save money on medical care by

Promoting Self Care and helping them to do as much for themselves as they can
Helping them with Evidence-Based Guidelines , so that they can ask for the right medical treatment that they need – no more and no less
Helping them with Veto Power, so they can say No to medical care they don’t need, thus preventing over-testing and unnecessary surgery.

Our focus areas now are:

Encouraging health insurance companies to invest in patient education
Advocating information therapy
Setting up a national network of patient education centers
Developing patient educational materials in Indian languages for the web at www.myhealthpedia.in

We are exploring how we can use the mobile to educate patients and have started a unique messaging service to be able to reach out to more people for a few pennies every month. There’s more information on this at http://mytoday.com/store/publishers/HELP

Patient education and patient empowerment is far more highly evolved in the UK as compared to India. We joined PiF so that we could learn from the experiences of what has happened in the UK so far!

We held India’s first conference on patient empowerment called Putting Patients First in October 2010. The website for this is at http://www.patientpower.in/ and we plan to do this as an annual affair. We will be very happy to have PiF members take part in the 2011 conference!

Previous members of the month from November 2010 to April 2011 can be downloaded by clicking on the month below:

April 2011: Carolyn Ing, Patient and Carer Information Officer and Information Prescriptions Project Support Manager, Tees, Esk and Wear Valleys NHS Foundation Trust
March 2011: Dr Kate, Hersov, Director, Medikidz
February 2011: Julie Holt, Meg Biggs, Michelle Gundersen-Reid and Sarah Stacy-Baynes, Editorial Team, Cancer Society of New Zealand
January 2011: Philip Hammond, Information and Engagement Coordinator, NHS Salford
December 2010: David Potter, Head of Information & Publications, MS Society
November 2010: Jo Evans, Patient Information Manager at Sheffield Teaching Hospitals.

Page last edited: 09 May 2012