Problem Statement

How might the SUDEP Institute (Epilepsy Foundation) devise an intervention that helps people comply with their medical treatment plan and monitor risk factors specific to prevent seizures?

It’s evident from the literature that there is a multitude of effective medical and lifestyle interventions that can keep People with Epilepsy (PwE) healthy. 

PwE as well all others with chronic conditions ought to adhere to their primary care providers’ medical and lifestyle regimen to reap the full benefit of the research and progress made in the treatment of their conditions. However, as with other chronic health conditions, patient compliance to an effective treatment regimen is a major barrier to the reduction of the sudden, unexpected death of someone with epilepsy (SUDEP).

“...compliance is a complex behavioral process strongly influenced by the environments in which patients live, healthcare providers practice, and healthcare systems deliver care.” (1)

The documented barriers to full compliance with a medication and lifestyle regimen as prescribed by the primary clinician are:  
cost  • side-effects • depression • stigma • culture • personality (2)

With this in mind, an effective intervention that will ensure that PwE reduces the incidence of seizures and therefore reduce the risk of SUDEP cannot thrive within a single channel of communication or activity. The barriers to compliance are a deeply complex problem and any attempt to “bootstrap” or self-manage this disease with a single device or app will always fall short of being genuinely effective.

The design intervention outlined in the next several paragraphs describes a systems approach to ensure a successful compliance outcome. It is a minimum-tech mechanism to support positive PwE behavior. This is what I have called
“COACH”: Care, Outreach, Action, Commitment and Holism. 

1. Volunteer Care Partner (VCP) personal phone contact at a prescribed timereviews medication use, lifestyle eventscapture data re: lifestyle event, medication use and side effectsmay upload data to portal (2)* if PwE is unable to

3. Primary Care Physician (PCP) introduces the COACH system to their patients through a simple visualization and information package.   (Messaging will also focus on research “wins”; costs of bringing medications to market with the intent of impressing upon their patients how much dedication and effort went into their  treatment programs)

4. The Pharmacist Care Partner (or a third-party specialist dispensary: e.g. www.pillpack.com)  creates weekly/daily medication packages to simply the dosing routine for the PwE. reassures/informs PwE about medication side-effects

5. The Family/Friend Care Partners (FFCP) may accompany the PwE to doctor’s visits and could also assist the VCP if the PwE is under the age of 21. 

*The online portal can be a simple one-page questionnaire that can be fully completed in 5 minutes. It would be a weekly task that is nudged by the VCP or transposed by them via a phone call. ( Patient data privacy issues can be mitigated by coding the questions and using a numerical answer system. Only the numerical values would be audible to the VCP when submitted by PwE during their weekly conversational update)

The literature review uncovered the following key factors to creating positive habits and behaviors that can be sustained over a longer term (3):

1. Motivation 2. Ability 3. Trigger

In terms of patient compliance with a regimen prescribed by their primary care partner, the design intervention intends to
address these factors:

Motivation:

It is untenable to believe there is any new information, short of a cure,  that can motivate a PwE to act on their condition. The threat of SUDEP is the ultimate motivator. However, the barriers to action supersede even this ultimate morbidity.  A PwE’s compliance requires consistent personal reminders, behavioral “nudges,” and empathetic support from all care stakeholders.

Ability:

PwE are given simple daily dose medication packs, which simplifies their dosing routine. No other action is necessary apart from receiving a weekly call (supervised). During this call, a discussion based on a simple questionnaire reveals issues and concerns. (These are tracked online by the Volunteer Coach or can be accessed directly by the PwE. This information is then made available to clinicians associated with the PwE).

Trigger:

A typical digital solution to compliance often employs an alarm-type system to alert a patient with regard to dosing behavior or other actions required.  In the case of COACH, this trigger is simply a weekly phone call.  Without any “software” interface, its inclusion in a patient’s life is virtually seamless.

CONCLUSION

“The pace of research on the epilepsies has accelerated considerably over the past few decades. Progress has been made in understanding how and why the epilepsies develop and how they might be prevented. Investigators have identified a variety of potential new treatments, and they may soon be able to use knowledge about genetic variations and other individual differences to tailor treatment for each person. With time and continued work, the missing pieces of the puzzle will be filled in to form a complete picture of how to treat and prevent all types of epilepsy.”(4)

In the face of the scientific work that still needs to be done, maintaining compliance with the treatments already in place remains a formidable one. There is no magic method.  Technology will not automatically offer a better solution. It often just creates one more layer of activity that obscures the real need of the people it's supposed to help.  “Please take your medicine, try to change your lifestyle, tell us how you feel” is the simplest and most “human” thing the PwE needs to do. Before a cure for Epilepsy is finally found, empowering the people that are already “in place” may be the best option yet to ensure compliance success and to keep the PwE healthy. 

Photo Credit: Celine Haeberly/Unsplash

References

1. Miller, N. H., Hill, M., Kottke, T., & Ockene, I. S. (1997). The multilevel compliance challenge:  Recommendations for a call to action A statement for healthcare professionals.  Circulation, 95(4), 1085-1090.

2. Martin, L. R., Williams, S. L., Haskard, K. B., & DiMatteo, M. R. (2005). The challenge of patient adherence.  Therapeutics and clinical risk management, 1(3), 189.

3. Fogg, B. J. (2009, April). A behavior model for persuasive design. In Proceedings of the 4th international Conference on Persuasive Technology (p. 40). ACM.

4. “Curing the Epilepsies: The Promise of Research”, NINDS. September 2013. NIH Publication No. 13-6120

Bell, J. S., Airaksinen, M. S., Lyles, A., Chen, T. F., & Aslani, P. (2007). Concordance is not synonymous with compliance or adherence. British journal of clinical pharmacology, 64(5), 710-711.

Bissell, P., May, C. R., & Noyce, P. R. (2004). From compliance to concordance: barriers to accomplishing a re-framed model of health care interactions. Social Science & Medicine, 58(4), 851-862. 

Jones, P. H., (2013). Design for care. Innovating Healthcare Experience. Rosenfeld Media, Brooklyn.