“Patient Engagement Partnerships”

Some of the greatest leaders of our lifetime have agreed on one thing: that biology and technology have been on a collision course for quite some time and the populations’ acceptance, and in some cases addiction, to their smart phone and smart devices certainly indicates the two are at the crossroads. Steve Jobs said, “I think the biggest innovations of the 21st century will be at the intersection of biology and technology. A new era is beginning” (Issacson, 2011). In June 2007 the manifestation of a handheld device was introduced to the global population that would immediately curve markets, spawn innovation, create job growth, connect humans in a fashion that we never thought imaginable, and plant the seeds of reform to the manner in which large institutions like Government and Healthcare operate.

This event in particular has forced the relationship between the Healthcare community and its customer to change. The platform by which Doctors and their patients interact is in need of a new, clearly defined meta-framework and process. One that can be measured, duplicated, and built upon as new discoveries are unearthed. One that meets the patients unmet needs.

 

Analogy of Change

Not since Gutenberg’s printing press have we as a humans seen such a dramatic shift in the power to access, share, store information, educate ourselves (quantitatively and qualitatively), and communicate so efficiently. The printing press gave birth to new ideas, new methods of science and religion, and did it in a format that translated to the masses thus spawning the Age of Enlightenment and the Reformation. Its hard to find something that has been more disruptive than Martin Luther’s “95 theses” in 1517 or Galileo’s “Sidereus Nuncius” in 1610. In comparison, the smart phone has proved to be the catalyst to increase human awareness, drive markets, and all in the manner which we operate, regardless of language and aptitude barriers, through mobility. It was a very simple adoption to our population because we got something for it. People saw what the device could do for them and simply accepted it out of their own self-interest. Therein lies the mechanism that is forcing change at the intersection of biology and technology; self-interest causing a shift in the opportunities and the obligations that we (humans) sign up for. Oddly, enough both the printing press and the smart phone have also changed the manner in which we as a people look at massive institutions like government, the church, and……..Healthcare.

With this new-age shift in power, the once paternalistic institutions like Healthcare and the regulatory agencies that surround it are now find themselves faced with (just to name a few):

  • Wearables, bio-sensors, and devices that are affordable, effectively educates its carrier, has requests to participate in trials and on-going wellness care, and can collect health-information in every-day environmental settings of the owner.
  • Data collection methods and storage, security, personal privacy
  • Access to affordable health related technology that was once only accessible by the medical community and illustrating results to the participant in simple terminology.
  • More efficient methods of performing clinical trials, expediting exams and treatments, and communicating with patient populations.
  • An empowered, educated consumer that looking for value through partnership with their healthcare providers
  • A push to create a seamless, transparent solution across a very fractured and compartmentalized industry with one contact point that simplifies the educational process, guides, monitors, and cares for the individual.
  • The patients wanting inclusion in the process

The dynamic between patient and provider to become more of a partnership, and even consumer, should reap a higher quality of care, higher rates of adherence, increased self-awareness, and alerts preventing critical care situations. On the medical/clinical side of the equation, this means higher enrollment and retention rates, novel therapeutic treatments that work, new discoveries via multiple data points, more efficient methods of testing drugs/devices and arriving at outcomes quicker, and new devices that engage its users with actual value-add information that may increase their well-being or potentially save their life.

 

Two critical points of reference

Device Growth Snapshot

“Explosive growth of smartphones and tablet PCs brought the number of devices connected to the Internet to 12.5 billion in 2010, while the world’s human population increased to 6.8 billion, making the number of connected devices per person more than 1 (1.84 to be exact) for the first time in history. (see Figure 1)”

Source: D. Evans, “Internet of Things”, 4/2011: cisco.com/c/dam/en_us/about/ac79/docs/innov/IoT_IBSG_0411FINAL.pdf

Based on those figures, we can look closer at the economic impact of “smart” medical device market. The global smart medical devices market is expected to reach USD 24.46 billion by 2025, according to a new report by Grand View Research, Inc. The increasing adoption of smartphones is observed as a major factor driving market growth. In addition, the technological advancement and the rising awareness and focus on fitness is driving the market (1).

  • “Diagnostic and monitoring segment emerged as the largest product segment in 2015 and is estimated to generate revenue over USD 8.0 billion by 2025
  • The industry in Asia Pacific is projected to witness substantial growth over the next decade owing to various developments across major economies. The regional market is expected to grow at a CAGR of over 20.0% from 2016 to 2025
  • Key players including Abbott Laboratories, Apple Inc, Dexcom Inc, Fitbit Inc and Medtronic plc among the others dominate the global smart medical devices market while accounting for majority of the volume in 2015”(2)

The Partnership

Partnerships require give and take from both sides whereby value is incorporated into the exchange.  In the case of Healthcare, and clinical trials specifically, a partnership is simply; a hierarchy of interactional (interchangeable) patient touch points and/or social engagements that are designed to establish a richer, personal experience for the subject and, in exchange; the clinical administrator receives a full life cycle and trial adherence from the patient.

There are a number of advocates in this arena that focus solely on creating the foundational framework for a more collaborative relationship between providers and their patients. Organizations like “patients like me”, “patient focused medicines development”, and “the patient advocate foundation” are all striving for collaborative efforts from the different stakeholders across the globe to identify the gaps and the synergies so a measurable solution can be discovered, and then built upon. The complexities of all involved in this ecosystem is overwhelming:

  • Healthcare – research, advocacy, policy, innovation, academia, medical/hospitals, pharma, devices, and think-tanks
  • Patients – Newly diagnosed – Non expert patient, In-treatment Non expert patient, Patient expert and advocate, caregiver

Meta-Data pooling across this landscape obviously illustrates diversity among all stakeholders and in some cases, where they may reside within the patient-lifecycle.

Therefore, identifying patient-partnership initiatives and solutions will be segment specific with the intention of pinpointing hybrid commonalties that can be implemented regardless of the environment.

Sample Use-Case (clinical trial UX)

So, now to the heart of the subject what does a solution promoting partnership look like?

Here’s a brief example of a use-case from a patient from LifeLab’s solution.

I’ve been asked to participate in thyroid study that incorporates a wearable device, requires me to partake in cognitive games/tests, and asks me to offer a blood sample via dried blood spot kit which I can perform pretty much anywhere.

  • I am advised to download an app to my phone (iOS or Droid) or head to a secure website whereby I can easily enroll, consent, and have immediate access to education (via literature, tele, and webinar) about the trial and content specific information from professionals about what it is I’m dealing with (my condition/ailment). I’m also briefed, in a very impactful and purposeful manner, what is expected of me throughout this process. That as well as preferences that I have on times of the day to be alerted, busiest day of the week, and thanking me for being part of an important undertaking has created a level of worth to this relationship. I feel empowered. I fell like a partner and a contributor rather than a test subject.

 

  • I have been advised, in layman’s terms, that my privacy (identity is safe and data will not be misused/mismanaged) is a top priority.

 

  • I am immediately offered additional personal touch points as well as information about the wearable device that ill be receiving and how it will benefit me throughout the trial.

 

  • Once I’m fully committed, I am fitted with the device, and I perform my first “baseline” task. It was comforting to know that any questions I had about the trial or technical questions were answered almost immediately

 

  • At the conclusion of that initial test I’m asked if I would like to join the social element that’s private to the trial team and the participants. Considering the subject matter, the size of the trial population (125), how the add-on feature was presented, and the manner in which I was treated thus far in the process, I trusted the recommendation and entered into a group of like-minded people who were fighting the same fight as me. I received lots of information, was able to share my own stories and tips, and even became friends with a few people. It changed the way I viewed clinical trials.

 

  • Throughout the 18 month trial I’m offered information based on wearable readings that I would otherwise have overlooked. I’m also prompted when new educational information is available to me in my portal, as well as when the social group “misses me”. The delivery frequency was very cognizant of my personal space and was more serendipitous in nature (outside of my role as a member of the study).

 

  • Upon the trial conclusion, I’m asked for feedback (further proving I have an amplified voice) and I reflect on what the experience offered me. It provided “meaning”. It gave me a sense of belonging and of purpose. The process and the people I was in contact with drove home the notion of why I was putting forth the effort. To help others. It provided a social platform within my group and that allowed me to share the experience with others in a very simple way, and receive support from those who understood what I was going through. Finally, when the trial was over I was offered to remain within the experience that empowered me…….it had left me with a sense of transcendence to “warriorship”. It left me missing the experience. I would do it again.

Outside of the patient outcome from the clinical side, the patient was educated, supported, and empowered to a level whereby they recognized the experience, the positive change within themselves, and would do it again. That is a good start.

 

The Common Goal

What are the goals we should be striving for?

The immediate goal is to identify a simple approach, or mechanisms, to this partnership that works as a foundation and can be replicated so its application (or parts thereof) will operate holistically within multiple healthcare segments where this relationship exists. This is not a one size fits all solution. As each individual is different, so are their needs. That being said, the patient will be the co-designer and will very much shape the way this foundational framework drives.

The longer term goals here are many on the Healthcare-side as each segment within drives its own motives: the General Practitioners, Clinicians, the Surgeons, the radiologists, the Nurses, the Researchers, the regulatory agencies, the medical device companies, etc. On the Patient/Consumer side its personal health and well-being for them, their families, and their community. They also attain a clear and transparent understanding the vessel (their body)  that they currently occupy, how to optimize all of its features to the fullest, and how to treat it when it is broken.

One clear point to be made to achieve short or long term goals; BOTH sides need to continue to evolve.

  • The market (the income/outcome population) is driving for change, better quality of care, more respect, and transparent collaboration. Health-care needs to evolve with that demand.
  • If the demand is met by the Healthcare community, it is hypercritical for the market population to adhere to the advice given within this partnership. There’s the give and take.

If that relationship remains harmonious, we will arrive at this: The Human “GIS”. The Geographic Information System of the Human Being.

Source: adapted from Eric J. Topol, “Individualized Medicine from Prewomb to Tomb”, Cell Volume 157, Issue 1, Pages 241-253 (March 2014)

“The ability to digitize the medical essence of a human being is predicated on the integration of multiscale data, akin to a Google map, which consists of superimposed layers of data such as street, traffic, and satellite views. For a human being, these layers include demographics and the social graph, biosensors to capture the individual’s physiome, imaging to depict the anatomy (often along with physiologic data), and the biology from the various omics (genome-DNA sequence, transcriptome, proteome, metabolome, microbiome, and epigenome). In addition to all of these layers, there is one’s important environmental exposure data, known as the “exposome.” (3)

To capture, leverage, and convey this concept, which is obviously always in flux, should be the collective goal among all parties. The table is set for the collaboration to progress toward this goal.

The LifeLab Tribe

references

1 – https://www.grandviewresearch.com/press-release/global-smart-medical-devices-market

2 – https://www.grandviewresearch.com/press-release/global-smart-medical-devices-market

3- Source: adapted from Eric J. Topol, “Individualized Medicine from Prewomb to Tomb”, Cell Volume 157, Issue 1, Pages 241-253 (March 2014)