Exposing Patients to the Bigger Mobile and Digital Health Picture - Did We Forget to Tell Them?

To understand just how far mobile and digital technology can truly influence progress in global healthcare, we first need to form the foundation of the discussion with a few rudimentary facts.

• Clinical research ("a branch of medical science in human beings") is critical to healthcare.

• All patients are human beings.

• All stakeholders are current or potential patients.

• All stakeholders therefore have a vested interest in progression of healthcare.

Our current healthcare model is evolving, slowly but surely. How this progression is defined, and how mobile and digital technology can help to speed this along, will be explored in this article.

The role of clinical research

Clinical research is conducted with the aim of further enhancing the health of humans via a number of different pathways. Increasing the knowledge surrounding an existing drug, device, medical procedure, or disease state, or investigating the potential of an innovative compound (IP, Investigational Product) all form the foundation for advancing global healthcare. The world health report 2013 "Research for universal health coverage" argues that universal health coverage—with full access to high-quality services for prevention, treatment and financial risk protection—cannot be achieved without the evidence provided by scientific research.¹

In order to better manage or prevent the healthcare problems that can emerge (through antibiotic resistance, climate change, challenging economies, wars, and a growing and aging population—to name but a few), clinical research needs to keep up-to-date, and advance at the same pace as society in general. It cannot be allowed to stagnate, because without clinical research global health would no doubt falter and decline. It’s that simple—but perhaps the connectivity and criticality of this is not recognized by the general public.

Movement of information regarding education, support and guidance, and of course data capture is critical and underpins all progress in both clinical research and healthcare in general. It stands to reason that better engagement leads to more informed and empowered patients, and that is ultimately what leads to improved patient outcomes. An opportunity therefore exists to truly embrace the mobile and digital revolution that has swept the globe, and utilize the popularity of this communication method to its full potential to help deliver clinical trials fit for the 21st century healthcare needs.

The role of the patient

We are constantly told that patient recruitment is still the single biggest limiting factor in clinical research,² which has caused people to ask the question as to why this continues to be so difficult. It has been proven through multiple surveys³ that insufficient numbers of people are aware of clinical trials—either because they are completely unfamiliar with what they are, or just not conscious of trials that they could join. It should also be acknowledged that there are many trials that are not of a suitable design for those looking to enroll, which is a frequent "gripe" of patient representation at conferences. Could there perhaps be more of a commitment from everyone to engage people from the outset about clinical research—prior to any medical need arising? The science curriculums in our basic education systems do not adequately introduce the critically important topic of clinical research. It seems we’re missing out on not only a very important link in the healthcare communications chain (i.e. the starting point), but also a significant opportunity to influence new ways of thinking and establish a new generation of clinical trial participants (and future influencers).

The role of healthcare professionals (HCPs)

For many years, healthcare has been managed in a language that prevents easy access. Long and complicated medical terminology has engendered an aura of ‘respect’ and ‘reverence’ from patient to physician. However, in this online information era, it seems that things are changing; patients are becoming increasingly confident in asking questions and searching for information, the mystique and complexity of medicine is being lifted, and it’s being brought down a level by mobile and digital technology—enabling the information to be more digestible for patients. Essentially, technology is making medicine less exclusive, and enabling better access to healthcare for the masses.⁴

The role of the HCP is therefore changing too. The medical community is learning to embrace mobile and digital technology and understand how best it fits into their day-to-day practices, whether that’s for data collection as part of a clinical trial experience, or through direct interface with patients to monitor, educate, motivate, or track their health. How exactly these newly captured data (individual or ‘big’) are used is specific to the environment and situation (the clinical trial objectives or the questions and gaps that exist in that medical field). It’s fair to say that it’s not always without challenges (such as integration of data with the hospital’s EHR system), but the stronger the rationale for use of the technology, the more likely the solutions will flow and embed.

It’s also interesting to see the increasing ‘accessibility’ of HCPs through online Q&A and consulting opportunities. Approximately 1 in 6 doctor visits in the US will be virtual this year.⁵ The media of an online consultation offers different opportunities for health advice and guidance packages to be provided, and potentially greater openings for discussion about clinical research potential—with the patient being directed more easily (through established workflows) to relevant materials that could be considered.

All of these small steps are changing the dynamics of HCP-patient interactions, and as a result, the role of clinicians is changing in both research and practice. Consequently, a new healthcare model is being defined by the advancing technology era.

The role of mobile and digital technology

Today’s youth has grown up in a technologically rich world, with mobile and digital communications reaching all corners of the globe. From their very first monetary transaction they have always known about internet banking. They have been brought up in a fast-paced and information loaded environment, with data available instantaneously for educational or social purposes. And now everything is accessible through an even more personal and portable medium on their [smart] mobile phone.

But what do patients really understand in terms of how mobile and digital capabilities are being introduced into the world of health? Whilst many might have heard of personal gadgets such as pedometers and how they are being used in tracking or improving fitness (often in those who are well, and interested in increasing their wellness status), it seems likely that the awareness of the link between health and mobile and digital technology stops there. Does the average person know that data can be collected via a mobile phone from clinical trial participants on how they feel by ranking themselves on an anxiety scale, and from there the results of those rankings viewed in real-time by the HCP in their hospital office to monitor efficacy and safety within that clinical trial? Do they know that asthma sufferers can blow into a spirometry device that has been paired via Bluetooth with a mobile phone, as part of a broader support package alongside their medication which helps them in tracking their own condition more accurately? I suspect that the public are largely unaware of how, where, and why mobile and digital technology is being used in clinical research and healthcare management, who can use it, when it can be used, and what options are available right now. Who is telling the public that we are now on a mobile and digital healthcare super-highway, and that they are allowed to join the journey? For example, the infographic in figure 1 could be used to convey the message simply and clearly in doctor’s offices, clinical sites and through general social media sites such as Facebook and Pinterest.

(Click to enlarge)

If popularized sufficiently through mobile and digital technology, could we anticipate a greater level of interest in and understanding of both clinical research and improved management of healthcare in general? Will it help to further engage and shape the thinking of our patients of today and tomorrow? There is much discussion ongoing about how technology is becoming increasingly important in the world of health, such that expanding internet access is now being considered as one of the drivers of health disparities.⁶ It seems that internet access is fast becoming one of our basic human rights to enable wellbeing.

The important questions we should ask ourselves are … Who owns our health, and whose responsibility is it? Does it belong to us as individuals? Does it belong to our Governments? Or is it a joint responsibility? Clearly, the answers to those questions are dependent upon where an individual lives, the national economic model, and the healthcare system that is in place. What is clear though is that with decreasing numbers of medically trained doctors per headcount (global population is now >7billion), and a seemingly crisis-level escalation in some countries of chronic diseases such as diabetes mellitus, when it comes to management of health, we need to embed a greater sense of ownership in everyone. Expanding on the first of those drivers for change, the density of physicians per 1,000 population is a stark reminder of the practical challenges and of the disparity in delivering healthcare globally; with fewer than 0.03/1,000 in countries like Sierra Leone and Liberia—where the Ebola virus is currently taking hold, through to the relative luxury of >6/1,000 in places such as Monaco and Qatar. Perhaps surprisingly, the US and UK have relatively modest rates of 2.45 and 2.79/1,000 respectively.⁷ It’s simple math, sometimes we need to help ourselves. Society therefore needs to wake up and take charge of this growing issue, and that’s where ‘mHealth’ can put that control back into the patient’s hands—whether that be in the form of digital access to a public health campaign regarding a quarantine zone, a web-based interactive neo-natal support program, or mobile data collection for a cystic fibrosis trial.

Just how far the mobile and digital revolution can take us in discovering otherwise unknown facts about health, is unclear. It could potentially reveal previously hidden secrets, through the power of the sheer volume of data that could be collected from patients or healthy subjects. We may well find that clinical research is changed through there being a greater level of honesty between HCPs and patients (or at least a greater convenience and control), and the ‘Parking Lot’ syndrome of last minute PRO (Patient Reported Outcomes) will be finally over. Perhaps we will see a greater ability to look at healthcare through a different ‘wide-angled’ lens. Imagine, if all chronic health sufferers were to give a health status on a given ‘WORLD MOBILE HEALTH DAY’, what a powerful and impactful ‘snapshot-in-time’ that would provide.

Clinical research is just a building block in the greater scheme of health management. But if we could ‘mobilize’ the population, and engage from the youth upwards, through education, then we have the potential to ease the patient recruitment problems in trials, and enable everyone to contribute to a much larger picture than we might have thought possible. We just need to let the patients know.

Judith Teall, Director of Clinical Excellence, Exco InTouch

References:

1. World Health Organization, “Research for universal health coverage: World health report 2013”, http://apps.who.int/iris/bitstream/10665/85761/2/9789240690837_eng.pdf?ua=1
2. A.M. McDonald, R.C. Knight, M.K. Campbell, V.A. Entwistle, A.M. Grant, J.A. Cook, D.R. Elbourne, D. Francis, J. Garcia, I. Roberts, C. Snowdon, “What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies.”, (2006) Trials, 7 (9)
3. I.S. Mackenzie, L. Wei, D. Rutherford, E.A. Findlay, W. Saywood, M.K. Campbell, T.M. MacDonald, “Promoting public awareness of randomised clinical trials using the media: the ‘Get Randomised’ campaign”, (2010), BJCP, 69 (2)
4. S. Baum, “How often do consumers use digital health tools? This graph will show you”, (2014), http://medcitynews.com/2014/08/often-consumers-use-digital-health-tools-graph-will-show/#ixzz3Ak1kavJ6
5. L. Mearian, “Almost one in six doctor visits will be virtual this year”, (2014), http://www.computerworld.com/s/article/9250262/Almost_one_in_six_doctor_visits_will_be_virtual_this_year?pageNumber=1&taxonomyId=132&utm_content=7438870&utm_medium=social&utm_source=twitter
6. J. Bresnick, “How can expanding internet access address health disparities?”, (2014), HeathITAnalytics,  http://healthitanalytics.com/2014/07/23/how-can-expanding-internet-access-address-health-disparities/
7. World Health Organization, (2014), http://gamapserver.who.int/gho/interactive_charts/health_workforce/PhysiciansDensity_Total/atlas.html