Breast cancer: From awareness to action

October is Breast Cancer Awareness Month, a campaign backed by the World Health Organization1 as well as numerous brands, and is marked in countries throughout the world1. The aim is to increase attention and awareness of breast cancer and through this improve early diagnosis, treatment and palliative care1.

Awareness campaigns are particularly relevant in countries with limited health infrastructure — with mammography screening being costly, detection of breast cancer is sometimes reliant on individual awareness of the early signs and symptoms14

Worldwide, there are an estimated 1.67 million new cases on breast cancer per year2. This makes it the second most common cancer in the world and the most frequent among women2,3. In several countries, mortality has decreased since the mid-1990s but in some parts of the world the number of deaths has remained constant or is even increasing2. In developing regions, breast cancer remains the most frequent cause of cancer death in women with over 500,000 deaths recorded in 20122.

breast cancer signs symptomsIn healthcare settings that support early detection and that have basic treatment available, localized breast cancer has a five-year survival rate of over 80%4. In contrast, in settings with limited resources the five-year survival rate drops to 10–40%4. Differences in survival rates mirror the awareness of breast cancer — in low- and middle-income countries most women are frequently diagnosed in the late stages of the disease1, something that might be reduced with increased access to health services and with greater awareness from both the public and healthcare providers of the benefit of early detection1. For information on the use of mammography in a variety of settings, a WHO position paper is available here. In November, the WHO will publish advice on how countries can improve diagnosis of breast and also other cancers.

Disease awareness campaigns play an established and very real role in realising the potential of modern medicine. The inequality in breast cancer mortality illustrates the discrepancies in out-reach that awareness campaigns may have and the ongoing importance of health literacy and education for awareness. Annual Breast Cancer Awareness Month is a reminder that greater health literacy and education are key to combatting preventable causes of death.

References

1. World Health Organization. Accessed 24th October 2016. http://www.who.int/cancer/events/breast_cancer_month/en/

2. Globocan 2012. Cancer Fact Sheets. Breast. Accessed 24th October 2016. http://globocan.iarc.fr/Pages/fact_sheets_cancer.aspx

3. Globocan 2012. Population Fact Sheets. World. Accessed 24th October 2016. http://globocan.iarc.fr/Pages/fact_sheets_population.aspx

4. World Health Organization. Accessed 24th October 2016. http://www.who.int/cancer/publications/mammography_screening/en/

5. American Cancer Society. Accessed 24th October 2016.  http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-signs-symptoms

 

Let patient opinion be the way marker of your strategy 

Patient opinions are recognised as a key driver of successful pharmaceutical marketing. After all, who are the end consumers of the health care system? It’s the patients, and some of their voices have become so prominent that they have earned the title ‘Patient Opinion Leader’ (POL), a phrase that intentionally reflects the value that key opinion leaders (KOLs) have within the pharmaceutical industry. The interaction between POLs and the industry is early in its evolution and challenges to this relationship are beginning to be defined.

Recognise the various shapes and sizes of POLs

POLs are distinct from the broader patient population in that they have a higher profile, which is based on media and communication skills, which they can use to fly the flag for the patient interests.1,2 These interests are different to those of the medical and scientific community and can’t be represented by medical opinion.1 Such interests might include challenges to quality of life, such as pain and fatigue, rather than clinical measurements such as disease progression. POLs can also make the industry aware of currently unmet needs. These might include a demand for enhanced practicality of devices, or the advantages of consistent long-term behavioural support. Identifying these needs not only opens avenues for the industry to develop more relevant products, but also enhances the success of current therapies by removing obstacles to adherence. An additional benefit of genuinely listening to patient opinion is the development of public trust in a product, brand or company.

The platforms used by POLs are diverse. POLs might be working in collaboration with industry or they may be independent. Some are found on social media (with prolific examples including ePatientDave and Andrew Shorr). Some are active in patient advocacy groups, committees, panels or research funding bodies. POLs and pharma employees are not mutually exclusive —industry professionals with personal experience can provide genuine and honest communication with other patients about a therapy area or product.1

Map the pitfalls to effectively use patient opinion

Using patient opinions in a valid way has challenges. These arise partly from difficulties in quantifying engagement — How can the real influence of a patient be measured? How do you know when you are really listening to what they are saying? These challenges mean there is ongoing development of treatments, products, education and communications that are not realistically workable or relevant for real patients.

Furthermore, there may be an intrinsic ‘Catch-22’ in attempting to work closely with POLs — With scepticism around industry motivations, openly using POLs for marketing purposes may endanger patient trust. For example, there is still a demand for nonpartisan proponents of vaccine use as suspicion continues towards individuals who have received industry funding.3 This same suspicion could apply to patients funded by the industry to act as POLs.

People trying to listen to patient opinions should also be aware that POLs may have their own conflicting interests.2 It might be hard to discern someone who is genuinely using their journalistic or public speaking skills to represent patient interests, from someone who is trying to raise their personal profile for their own (potentially subconscious) ambitions.

There might also be a selection bias in listening to POLs rather than the wider patient population.1,2 It shouldn’t be assumed that loud opinions are a surrogate for all opinions. Many patients may be in quiet disagreement with the voices that are supposedly representing them. The internet and social media provide a channel to capture these views — but does everyone state their opinion through Facebook comments and online forums? Some patient opinions may be deliberately concealed, for example if experiencing side effects may lead to discontinuation in a trial.1 There are also some groups of patients who are inherently less able to articulate their own needs and desires (such as children, or people with dementia).1

Your way forward with POLs

Similar to how the industry has segmented physicians in order to target key messages, different groups of POLs are now being noted — Some appear to concentrate on disease advocacy while others aim to directly support the needs of other patients.2 Do these different POL ‘objectives’ require differing engagement strategies?

Understanding the diversity of patients who aren’t opinion leaders is also informative. Who does each patient influence and who are they influenced by? What do they want from their healthcare? How do different people cope with their differing medical challenges? These differences are not predicted by demographics.1 Patient experience might also not translate across the varying aspects of care available in different countries and health care systems.2

The physician’s office is one arena in which patient opinions can be sampled. Supporting the doctor/nurse-patient dialogue, and accurately reflecting it, could therefore be informative. Providing accurate and accessible scientific and medical information and education to patients also has advantages — Informed patients have been historically capable of instigating economic and regulatory change in healthcare systems from the ground up, an example being patient activism leading to the US Orphan Drug Act.4 Medical education initiatives might be enhanced by supporting patient access to high quality patient education, for example by collaborating with the Patient Information Forum5 and accrediting materials to The Information Standard.6

Overcoming some of these challenges could be achieved by listening to patients and supporting what they are saying, rather than trying to engage them.7 This may require the training of marketing teams and doctors on better, more thorough communication with patients.7 Such training might be particularly relevant as the interaction between pharma and POLs is increasingly scrutinised by compliance regulators.1,2,7

Despite the power of modern marketing and technology, word of mouth remains a powerful influence on behaviour.2 Ultimately, to successfully pitch to the patient consumer there may not be a substitute for correlating brand strategy with real patient benefit.

References

  1. Patient Opinion Leaders: The New KOLs for Pharma? Pharmaphorum. June 2014. Available at: www.pharmaphorum.com.
  2. Jehan Dix M. (2015). What are the Possible Futures Impacts of Patient Opinion Leaders on Healthcare and Healthcare Stakeholders? (Bachelor thesis, Haute école de gestion de Genève, Switzerland). Available at: http://doc.rero.ch/record/258519/files/TDEE_Dix_Meryl_Jehan.pdf. Accessed September 15th 2016.
  3. Domurat Dreger A. Reporters Need to Avoid Experts with Vaccine Industry Funding; Here’s Why, and Here’s Help. 12th September 2016. Available at: http://alicedreger.com/list Accessed 15th September 2016.
  4. Novas, C. Orphan Drugs, Patient Activism and Contemporary Healthcare. Quaderni 2009;68:13–23. Available at: http://quaderni.revues.org/262. Accessed 27th September 2016.
  5. Patient Information Forum. Available at: http://www.pifonline.org.uk. Accessed: 27th September 2016.
  6. The Information Standard. NHS England. Available at: https://www.england.nhs.uk/tis/our-members/. Accessed September 27th 2016.
  7. What is a Patient Opinion Leader? Patient Empowerment Network. Available at: https://www.powerfulpatients.org/2014/04/30/what-is-a-patient-opinion-leader/. Accessed: September 15th 2016.

 

World Health Day 2016: Beat #diabetes

The World Health Organization’s annual World Health Day will be held 7 April, and will tackle the growing global issue of #diabetes.

According to the WHO, the broad goals of making diabetes the focus of #WorldHealthDay2016 are to increase prevention efforts, strengthen care and enhance surveillance. In more detail:

  • Increase awareness about the rise in diabetes, and its staggering burden and consequences, in particular in low-and middle-income countries.
  • Trigger a set of specific, effective and affordable actions to tackle diabetes. These will include steps to prevent diabetes and diagnose, treat and care for people with diabetes.
  • Launch the first global report on diabetes, which will describe the burden and consequences of diabetes and advocate for stronger health systems to ensure improved surveillance, enhanced prevention, and more effective management of diabetes1.

Diabetes_2

That’s because diabetes has become one of the major causes of premature illness and death in most countries, mainly through the increased risk of cardiovascular disease — which itself is responsible for 50–80% of deaths in people with diabetes2. Eighty percent of diabetes deaths occur in developing countries, where the population most frequently affected is between 35 and 642. This means people at relatively young ages are not only dying due to diabetes, but also living with other conditions caused by diabetes, including blindness, lower-limb amputation and kidney failure. Furthermore, reports of type 2 diabetes in children, considered a rare condition in the past, now account for nearly half of newly diagnosed cases in children and adolescents2.

Diabetes_1

However, type 2 diabetes is preventable. It’s a chronic disease that occurs either when the pancreas does not produce enough insulin (which regulates blood sugar) or when the body cannot effectively use the insulin it produces. If the cells do not react to insulin properly, by absorbing enough sugar from the blood, glucose builds up to harmful levels. Thus, simple lifestyle measures can be implemented to prevent, delay or help manage type 2 diabetes in many cases: maintaining normal body weight, engaging in regular physical activity and eating a healthy diet.

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Take the WHO’s quiz to find out how much you know about diabetes. Then join the effort to raise awareness, increase access to diagnosis, spread the word on self-management education, and more with a variety of World Health Day 2016 resources.

References

1. World Health Organization. World Health Day 2016: Beat Diabetes. Accessed March 2016 at: http://www.who.int/campaigns/world-health-day/2016/event/en/

2. World Health Organization. 10 Facts About Diabetes. Accessed March 2016 at: http://www.who.int/features/factfiles/diabetes/facts/en/

 

Power to the people: Make gains by focusing on health literacy

The concept of health literacy is actually fairly new. The term was first introduced in 1974, when Simonds argued that students could also be literate in health, just as they are in other subjects, such as maths or reading1. By the 1990s, the World Health Organization (WHO) had taken up the cause, culminating in the publishing of its own definition of health literacy in 1998’s Health Promotion Glossary2. As governments and health systems make pushes towards more patient-centered care that empower patients to share in making decisions about their treatments, the concept of health literacy has never been more important. Read on for an overview, as well as why pharmaceutical and medical device makers should be focusing on health literacy as part of an overall medical communications strategy.

Defining health literacy

Since the WHO brought health literacy to the world stage, the concept has continued to evolve, inspiring a multitude of research on health literacy in a variety of health conditions and contexts. Researchers are now seeking to integrate existing definitions and conceptualisations of health literacy “into an encompassing model outlining the main dimensions of health literacy as well as its determinants and the pathways to health outcomes,” so that health literacy can be better promoted and measured3. In 2012, researchers created a model that “identifies 12 dimensions of health literacy, referring to the competencies related to accessing, understanding, appraising and applying health information in the domains of healthcare, disease prevention and health promotion, respectively” (see Figure 1)3. This is a straightforward, comprehensive lens through which to view the concept of health literacy, so it’s what we’re referring to going forward.

Figure 1. Dimensions of health literacy

Fig 1a Dimensions of health literacy

The impact of health literacy

As management of chronic illnesses (e.g. diabetes, vascular disease) in particular has come to dominate the global conversation about healthcare, ongoing therapy is often necessary for optimal outcomes. However, health services and clinicians alone cannot be entirely responsible for this burden — patients must also be fully engaged in their care. If they cannot understand what their care regimen is, why a care decision has been made, how to participate in that care, whom to contact about their care, and when to carry out or pursue care options, health outcomes suffer. More specifically, poor health literacy results in:

  • Errors
  • Poor quality of care
  • Risks to patient safety
  • Inability to communicate in public and private dialogues about health, medicine, scientific knowledge and cultural beliefs
  • Lower quality of life
  • Decreased equity and sustainability in health systems3

Without a system-wide focus on health literacy, people with a variety of acute and chronic conditions may not understand health-related educational materials, making them arduous to self-manage. Without proper self-management, patients have a greater risk of developing many secondary health conditions. This can be a colossal expense for the individual and healthcare systems overall. Health literacy is a core foundation for a patient’s ability to self-manage and should be treated as such.

Approaches to health literacy

Low health literacy levels can broadly be addressed by educating persons to become more resourceful (i.e., increasing their personal health literacy), and by making the task or situation less demanding, (i.e., improving the “readability of the system”)3. That is, patients should have a wide variety of options to choose from, to suit their personal situations and learning styles, and these options must be delivered in a way patients can easily understand. More specific examples ways to improve health literacy for patients include:

Blogs — Written in conversational, easily understandable language, blogs are designed to be quick reads on a single aspect of a bigger topic. This approach allows patients to read about the specific information they’re looking for, and link to other related blogs, if they choose. Patients don’t feel overwhelmed by a paper that tries to do everything at once, which helps enhance information retention. The advantage for pharmaceutical and device-makers is that a regularly updated blog helps SEO optimisation, thus keeping the company at the fore of web search results — and at front of mind for patients and clinicians (who often direct patients towards patient education options).

Websites — A well-organised and well-thought-out website delivers a variety of learning modalities to patients. It’s easy to explain concepts visually (e.g. through infographics, pictures or medical illustrations), provide audio explanations for visually impaired patients, and embed videos that let patients follow step-by-step — or even hear stories from patients just like them. A page with downloadable resources lets patients engage in their education and care even when they’re not online. And a mobile-optimised website means they can check for answers to questions anytime, anywhere on their tablets and phones.

Patient education materials — These can be downloadable or more traditional printed resources. Straightforward language and clear visuals can be integrated to help patients, for example, prepare for surgery with a specific device, self-care after that surgery, how to administer diabetes medication, or how and when to take blood pressure readings.

Apps — Apps have the same anytime-anywhere advantage as websites, but they can take health literacy a step farther by making education interactive. Health literacy is not just about being informed, but about how patients are able to apply that information to their everyday lives and care. Apps can be developed to help guide patients through steps in their care — letting them get ‘hands-on’ experience before actually doing — and to integrate reminders about their care regimens and a place to record their care-related activities, for example.

Engaging patients directly in their own care in one or more of these ways positions companies as more than pharmaceutical and device makers, but as thought leaders concerned about patients’ overall wellbeing.

Health literacy never loses its importance

Too often, patient education materials are written at a readability level too advanced for the average patient. Writing medical information in an easily digestible format is not the same as ‘dumbing it down’. Rather, distilling information for patients requires in-depth knowledge of a therapy area or speciality, so that it can be conveyed in a way that is both technically sound and easy for the average patient to follow. Medicalwriters.com has experts across the healthcare spectrum, experienced in delivering a wide variety of educational materials that can help you lead the way in improving health literacy. Remember: Acute and chronic health conditions can occur in all stages of life, to people of all education levels, and health literacy helps optimise outcomes and save lives.

References

1. Simonds SK. Health education as social policy. Health Education Monograph. 1998;2:1–25.

2. World Health Organization. Health Promotion Glossary, 1998. Accessed March 2016 at: http://www.who.int/healthpromotion/about/HPR%20Glossary%201998.pdf

3. Kristine Sørensen, Stephan Van den Broucke, James Fullam, et al. Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health. 2012;12:80. Accessed March 2016 at: https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-12-80

 

Patient education – more than meets the eye

Patient education is evolving. It’s no longer enough to simply “tell” patients what to do — healthcare reforms in many countries aim at empowering patients and engaging them in their care. Plus, patients can’t be expected to remember everything they’ve been told in the clinic or hospital, considering the volume of information, medical jargon and differences in clinicians’ communication abilities, not to mention the stress of being in the healthcare environment.

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International Cartilage Repair Society chooses Medicalwriters.com as the medical writing provider for patient education project

We are pleased to announce that our agency has been chosen as the medical writing provider for the new patient eduction project of the International Cartilage Repair Society. The mission of the International Cartilage Repair Society is to advance science & education in cartilage repair worldwide.

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