What a patient reader needs, and when
A patient reads health information to understand an illness and to make decisions about it. What they need depends on why they read rather than ask their doctor, on how far the illness has progressed, on where they look and what they find, and on whether the information gives the context that makes the facts usable, through to living with a serious illness.
Why a patient reads rather than asking the doctor
Cancer patients need easily understandable information about the disease, treatments, side effects and outcomes as quickly as possible, and some of them are not getting it from their doctors. A study of 269 cancer patients in the UK in the mid-1990s found that 79% of them wanted as much information as possible. An online survey of cancer patients in Israel in November 2011 found that 35% defined the information they received from their doctors about their disease and possible treatments as insufficient, 28% regarded it as incomplete and 21% said it was unclear.
Research has shown that some patients are willing to trust their physician's knowledge and so are unlikely to seek out extra information, while others are reluctant to take up too much of a doctor's time, aware of the limited time the doctor then has for other patients. In Europe in 2020, patients were taking on increasing responsibility for their health while having less time with their traditional information source, their doctors, and this lack of health information support was driving their hunger for health news and information. Particularly in cancer, the issues that stem from an accurately conveyed and understood diagnosis may be difficult to identify correctly, because, as of 2012, some doctors did not reveal the actual diagnosis to the patient, in many cases even when the patient asked to be told the truth.
If cancer patients do not get the answers they want from their doctor's surgery, the internet is an obvious port of call, but the information they find there may not be easily understandable: one study found that information on breast cancer prevention from the US National Cancer Institute's website was written at far too high a level.
How the need changes over an illness
Cancer patients are not a homogeneous group: research has shown that their information needs are fluid, liable to change as the disease progresses. Various studies found that, at certain times during treatment, patients avoided potentially negative information as part of a coping mechanism.
Cancer survivors
With better prevention, early diagnosis and improving treatments, more patients survive cancer, and new issues concerning them have made the survivor another important stakeholder in cancer communication. The term cancer survivor originally referred to family members who had lost a loved one to the disease, but by the 1960s physicians used it for those who had survived five years past their diagnosis or treatment, when the risk of a recurrent cancer had diminished substantially. In 2012, views of what constitutes a survivor still differed, and the National Coalition for Cancer Survivorship and the NCI Office of Cancer Survivorship considered a person a cancer survivor from the time of diagnosis through the rest of their life. In 2012, nearly 12 million people in the USA were survivors, almost four times as many as 40 years earlier, and the UK had over 2 million, a number predicted to rise to 4 million by 2030. The rise reflects big strides in cancer detection and treatment and the effect of an ageing population.
Survivors, like many patients, are usually well informed and particularly motivated to pass on to fellow patients the knowledge they gained during their treatment: as of 2012, some 70% said they would volunteer to assist in survivorship activities. By 2012, the number of survivor narratives available had risen with their numbers, and survivors were very visible on most information sites: the website of the American Society of Clinical Oncology had a section dedicated to them. Their quest for information and involvement may not lessen once treatment has ended, because many of them face a lifetime of side effects caused by their treatment: in one study of over 1,000 survivors, 53% reported secondary health problems and 49% reported unmet non-medical cancer-related needs. Many people who have survived a serious illness get stuck after treatment and are left on their own to fend for themselves: one woman with breast cancer felt fine but knew that something terrible was going on in her body, felt mutilated and not fine after surgery and chemotherapy, and was then told by her oncologist to get on with her life.
Where patients look for health information
Many people look for health information online. In a survey reported in 2015, 72% of internet users in the US said they had looked online for health information of one kind or another within the past year, and 35% said they did not visit a clinician to get a professional opinion. In a survey of adult internet users reported in 2019 and 2020, 83% had looked online for health information and 60% said that it had affected their decisions or actions. In surveys reported in 2021, 73% of Americans obtained health-related information from the internet, and 52% of EU citizens aged 16 to 74 reported having sought health information online within 3 months. A survey among physicians, patients and caregivers reported in 2021 found scientific journals to be the third most common source of health-related information online (47%).
Websites relevant for cancer patients in 2012 included:
- a professional society's website, with its separate website for patients and a section for survivors
- a national cancer institute's site
- a guideline network's guidelines for patients
- a medical education website for oncology clinicians
- a free individualised survivor care plan
- a survivor narrative
- a cancer survivor networking and dating site
By 2024, many national public health bodies, research hospitals, patient organisations and non-profit bodies were developing plain language materials, such as videos, information brochures and infographics, and making them freely available on their websites and social media channels.
Patients also use social media to connect and improve care, and in online communities they engage cognitively and emotionally with caregivers and other patients in distinctly non-clinical language, colourful, playful and powerful and seeded with metaphorical narratives of injury and recovery. Software and research strategies have been described for identifying medically relevant social media and designing high-impact patient language, illustrated by original qualitative language research in over 400 cases from traumatic brain injury (concussion) communities.
Many readers have concerns about the credibility of what they find online. In one survey reported in 2021, respondents had concerns about the credibility of online health information: fears that it was false or misleading (52%) or was trying to sell products or services (47%), confusion over research studies that seem to contradict each other (43%), difficulty understanding the information (31%), and fears that companies were tracking what they searched for (29%). Roughly two-thirds of the same respondents saw health information on social media, and 83% were concerned that it was incorrect or misleading.
The information patients get and the demand for better
As of 2020, the quality and amount of appropriate information available to patients was far from ideal. Twenty percent of patients said they had not been given enough information about their condition or treatment while in hospital, and although doctors were most people's preferred source of health information, 17% did not feel that their general practitioner was good at explaining tests and treatments. The information available to patients was of variable quality and often not fit for purpose. From 2015 to 2021, the quality of the health information available to patients was a major concern and increasingly important. When the public searches for information, it is vital that the information is accurate, reliable and presented so that they understand and can engage with it, which aids clarity and helps to avoid misinterpretation.
The clamour for more and better information for patients grew over the five years to 2020. In the Patient Information Forum's most recent survey as of 2020, two-thirds of those working within the UK National Health Service believed that patient information was rising in importance. By 2020, access to patient information was firmly embedded in health policy across the UK, including the National Health Service Constitution, England's Health and Social Care Act 2012, the Patient Rights (Scotland) Act 2011, Together for Health in Wales and Quality 2020 in Northern Ireland, as well as in professional codes of conduct. Access to patient information was also at the forefront of consideration in the EU, which in this led the US and its more diffuse regulatory framework. Global interests were following suit, which made it imperative for all drug and device sponsors to develop understandable and usable information for patients.
By 2020, the move towards patient engagement and patient involvement in healthcare decisions, or shared care, had triggered a raft of new guidance from regulatory authorities, with new regulations mandating that pharmaceutical companies engage with patients and the general public in a way that had been improbable before. Industry and patients have generally supported and welcomed this move. Producing complex scientific and medical information in health-literate plain language that is appropriate and helpful for the general public requires skills beyond those usually needed for communicating with healthcare professionals and regulatory authorities. Presenting data and messages so that a lay audience can both understand and use them is a huge challenge and needs a skill set different from that used to present data to regulatory authorities. Medical writers are highly trained in a technical writing style and tone aimed at readers with a very high level of literacy and often considerable scientific and medical knowledge. Translating that information into plain language for readers who may have low health literacy and little or no scientific or medical knowledge is a significant challenge, as the level of information available in 2020 reflected.
Patient-centricity and transparency are not new, but in 2015 they were increasingly important in regulatory documentation. Transparent and patient-centric documents are intended to help a lay audience understand complicated issues so that they can make an informed decision with their healthcare provider about a drug or treatment. Such shared decision making is attractive to over-stretched and under-funded health services because it dovetails with patient groups' demands for more and better information about their medicines and treatment options. No decision about me without me has been a mantra in the UK since 2010, supported by government and the NHS, by an account of 2021. An account of 2015 gives it as a mantra of the previous three years.
In 2019, the drive for clearer and better information for the lay audience was not decreasing but gaining momentum, and the latest regulations and guidance acknowledged it. Medical writers are the gatekeepers of the health information available to patients, and they should welcome the trend towards more information for patients, as long as that information is in a form that is helpful and fit for purpose.
What consumer health information is for and what blocks it
Consumer health information helps patients and the public make informed decisions about their lifestyle and well-being, their medical conditions and treatments, and their choice of provider, which was a new concept in the UK in 2013. Everyone is a potential patient, yet when an EMWA conference audience, mostly the association's members, was asked in 2013 whether they were patients, 53% said no and 10% did not know. The quality of the information provided to patients is vital in effecting positive outcomes, preventing disease and allowing patients to control their health. By 2013, the Patient Information Forum had produced a report showing the power of high-quality information.
As of 2013, consumer health information still faced many challenges:
- it is not integrated into the provision of patient care
- quality standards are lacking
- investment is low
- there is too much duplication
- measurement focuses on provision rather than outcomes
- the expertise it requires is not recognised
- clinicians receive very little ongoing education about communication skills
- there is not enough acknowledgement that one size does not fit all patients
The same conference audience confirmed that one size does not fit all: asked how well informed they had been the last time they had to make a medical decision, they gave a wide range of answers.
Context as well as facts
When people are diagnosed with a medical condition, disease or life-threatening illness, they often feel that they have been thrown onto a foreign planet without a roadmap or dictionary and without any type of survival training. Useful information is critical to help them make some of the most important decisions of their lives, yet, as of 2020, most medical information was designed to talk down to patients rather than to assist them. The medical system typically focuses on the medical treatment a patient may take, whereas a person who has just become a patient has a much broader spectrum to consider and has to work out how each medical option may affect every facet of their life, and that context is most often missing for patients. If the pharmaceutical industry can help healthcare providers show accurately how a treatment option fits into a bigger plan, patients can understand what to expect and choose the options that fit their lifestyles, personal needs and beliefs. Communicating this effectively to patients is important, yet it is often not included in medical training, or is considered only within advertising in the life sciences. Companies that learn to produce accurate, objective information for patients without it being promotional, deliberately or otherwise, will find receptive audiences among patients, those who support them and health authorities.
To be fit for purpose, patient information should be understandable and relevant for the patients it is aimed at, and it should explain not only the scientific or medical details but also what they mean for the patient. Writing for the right audience means understanding what the reader wants to know, what they need to know and what they might know already. Patients prioritise four points of information when they read about medicines: what the medicine does, what to do and what not to do when taking it, the side effects they might experience, and what the medicine means for them in their day-to-day lives. A writer communicating with patients should think in depth about them: the age range, their reading age as well as their age, their health literacy, and whether they already have some context for their disease. Developing patient-focused materials can help improve accessibility, because those with the lowest health literacy experience the greatest burden of disease.
Plain language is not just a translation of difficult or long scientific words: it should include enough explanation of the context and concepts for the reader to understand the importance of the information, and the context needed may be scientific, medical or social. The medical writer's job is to provide this information in a format the patient can understand as easily as possible, which is often far from simple, because the reader's first language might not be English, they might have a cognitive or visual impairment, or they might not be able to read at all, which calls for careful use of visuals. It takes experience and skill to identify potential hurdles to understanding, let alone to overcome them.
Information at every step of trials and care
In 2020, in response to EU regulations, much of the focus on health materials for patients was on clinical trials, specifically on returning trial results in plain language to the patients who were enrolled. Providing trial results to those enrolled is an important ethical, and now regulatory, obligation, but it is only a small step towards fully meeting patients' needs. To meet patients' needs more fully in clinical trials, materials understandable to all patients must be available throughout the process, from the early stages of drug development, through recruitment and the informed consent process, to participation, maintenance and completion. The same holds in clinical care, where patients and caregivers require clear and understandable information at every step from diagnosis to selecting appropriate treatments and adopting them into a practical plan that works for their lives. Transitions between care settings are particularly problematic, because the shifting of responsibility between professionals or caregivers and the resulting potential for miscommunication increase the risk of complications to patients. In all contexts, health materials must be understandable, contextual and accessible, and accessibility covers every aspect of health information, including the text, audio, images, video and delivery formats.
Making sense of clinical research
To make sound health decisions, a patient needs to be sufficiently informed and health literate, yet many patients lack the health literacy to understand the information they need to make health decisions. Although the level of health literacy worldwide was improving in 2020, many patients still had difficulty obtaining and understanding health information, and access to clinical research data was one such problem: many patients find themselves lost in a plethora of information that is difficult for them to understand and relate to their health issues. In the years to 2020, access to clinical research data improved remarkably, as researchers in academia and industry made clinical documents and datasets available through independent portals such as clinicalstudydatarequest.com, yoda.yale.edu, ClinicalTrials.gov, EudraCT and ICTRP and other publicly available sponsored websites. Easier access will also create a problem for interested readers, who will have to deal with the vast volume of mostly industry-sponsored data, and the public will have to learn to place individual trial results in the overall research context, which raises a further issue, the lack of independent academic research. Medical writers who understand the clinical trial process can help patients sift through the mass of clinical trial information that the mandatory publishing of layperson summaries will make available.
In allergy, few innovations appeared in the years to 2020 and most interventions only treat symptoms, and this lack of basic and clinical research means that information about the treatment of asthma and other respiratory diseases is limited. That lack of balanced information is particularly problematic for patients and for general practitioners, who need to understand the underlying disease process and the appropriate treatment. In 2020, there was a need to educate patients about their medication after diagnosis: patients need to take their medication, have good lifestyle habits and avoid behaviours that may worsen their disease, even when they are feeling well. More patients need to become better informed about their condition and how best to manage it.
Living with a serious illness
The authors of a guide for people facing serious illness hold that modern technology has changed both the way people live and the way they die, but that most people try to avoid the issues of death and are unprepared to make decisions about it. The avoidance shows in the words people use: in society it is more common to hear that someone is gone, was lost, passed or expired than that they died. Death is not talked about casually or often, and a reviewer of the guide holds that it should be discussed more often. Talking about death does not make it happen, though many people are afraid it may.
People who are dying are often treated as though they were a separate world apart from those who are living, when in reality they are among the living and want to be with family and friends, pursue hobbies and keep up with the things that interest them. The guide's authors posit that one is living with a serious illness rather than dying of a disease. Characterising people as living or dying can be misleading, because most people experience several serious illnesses as they age: someone who has recently survived a heart attack, or a woman who has survived breast cancer for more than two decades, would hardly classify themselves as dying. Many people are already somewhere on the spectrum between living and dying, and the point at which the transition from one to the other occurs is often not clear-cut, which is why it is important to consider what constitutes a good death earlier rather than later. Communication is important to a better quality of life at life's end, for example in communicating treatment wishes to loved ones or in using legal documents to convey advance directives.
For talking with a sick person, the guide's authors suggest asking "Dad, are there some things that worry you? It must be hard to come to terms with all this" instead of saying "Dad, you're going to be just fine", and saying "We will always be there for you" instead of "Don't talk like that! You can beat this".
To get the most from a visit to the doctor, a person living with a serious illness can prepare a list of the questions and concerns they want to discuss. Questions worth asking include what usually happens to people who have this disease, how long people usually live with this illness, what is the best that can possibly be hoped for, and what is the worst that is likely to be faced.