Driving patient value by minimizing patient burden

patient burden


  VALUEPatient  = (HEALTH OUTCOMESPatient) / (BURDENPatient)

In the first part of this article, the focus was on increasing patient value by improving health outcomes.  Five drivers were highlighted:

  • Better wellness care
  • Better access to treatment
  • Early detection
  • Find an excellent doctor
  • Pursue the best treatment plan

Technology has served as a key catalyst to achieving greater outcomes, but education is necessary, so patients and caregivers appreciate what is possible. The other lever to influence overall patient value is patient burden – if we can reduce the denominator, value can be increased.  What specific opportunities exist to minimize the patient burden as we attempt to execute the Personalized Treatment Plan – a holistic, tailored treatment plan designed to meet the unique needs of the individual patient?  Consider the challenge of gathering all the existing patient data as input into the multidisciplinary meeting to establish the Personalized Treatment Plan.  If there was no previous screening or testing, then it is straightforward – order a complete set of tests at the Multi-Disciplinary Clinic (MDC); or if previous testing was done within this health network, then the information is readily available.  But often, patients are referred to MDCs from outside the network.  Previous scans and tests need to be sent and often these may not be specific enough now that the patient has been diagnosed.  New tests may be needed and would need to be scheduled, and of course, patients need to understand potential cost implications.  Patients want to make sure the MDC has all the information it requires to develop the Personalized Treatment Plan the first time – no rework or delay because there is missing data.  This should be seamless and painless for patients.  

When considering burden, it is not just patient burden but should include patient and caregiver/family burden.  It should be noted upfront that the chosen treatment plan by its nature has an associated level of burden.  If chosen, a clinical trial carries a degree of burden, whether it is limited sites executing the trial or the need to gather and track very detailed information beyond that which might be required if undergoing standard of care treatment.  The question is how we can best meet the requirements of a clinical trial or the Personalized Treatment Plan while trying to minimize the burden on the patient and caregiver.  How can we reduce patient burden?

  1. Easier access to healthcare – This factor was also highlighted in the first part of this article – improving health outcomes, but it is an important factor in reducing patient burden and needs to be improved, particularly in underserved communities. Healthcare access should be: 
    • Convenient, with pharmacies, doctors, and health clinics in the neighborhood.  
    • Affordable, with help provided to make sure the costs to patients are not burdensome.
    • Trusted.  Medical professionals need to be trusted partners in the community, providing high quality care, but also helping patients navigate the complexities of the healthcare system, particularly when referring to specialty doctors or medical centers.  
    • Timely and available when needed.
  1. Make it easier for patients to find clinical trials – Should a patient participate in a clinical trial or not?  This is a difficult decision for many as patients consider the alternative treatment options available – will the current standard of care address my disease, or should the patient consider another option that may not be currently approved by regulators but offers a promising path forward?  

Patients still face hurdles after establishing clinical trials as a viable treatment option –   how do they find appropriate clinical trials, let alone the ‘best’ clinical trial to meet their needs?  How do patients navigate the very complicated landscape of clinical trials – unfamiliar medical terminology?  Confusing inclusion/exclusion criteria to most people?  What exactly is required of the patient if they participate in a clinical trial?  And importantly, what can be done to reduce the patient burden?

Tools that help patients find appropriate, actively recruiting clinical trials would be incredibly helpful.  Clinicaltrials.gov can be difficult to navigate, however, new tools are available to help patients find appropriate clinical trials where the patient meets the inclusion/exclusion criteria, that are actively recruiting new patients and identifies clinical trial sites.

In addition, clinical trials sponsors can reduce patient burden by improving the Informed Consent Form (ICF).  These forms can be difficult for patients to review as the information is often presented in a technically dense, legalistic manner.  Materials should be presented in patient-friendly language, so patients understand what the trial entails.  Each patient is different and may seek a different level of understanding.  I recently reviewed patient-facing clinical trials materials that used QR codes that allowed the patient to better understand the underlying science, if interested.  By scanning the QR code, the patient was taken to a video describing the mechanism of action in a simple, streamlined manner.  Only some patients might be interested in understanding this, but it is available for those who are and allows patients to easily find the information that they might need to make an informed decision on whether to participate in the trial.  

  1. Improve clinical trial design through co-creation – Sponsors should work with patient experts to proactively identify patients’ concerns.  Have telehealth options been considered to reduce the number of trips to the clinic?  Are all of these biopsies required….because these procedures can be painful?  Patient experts should be engaged and engaged early.  These patient experts provide unique insights into the design process based on their personal history of disease (PhD).  After all, they have lived the patient journey.  

Many companies have established Patient Councils to gather patient input, but all councils are not created equally (I described Patient councils in greater detail in a previous post). Some councils are tasked to function primarily as ‘review boards’ as teams bring their patient facing materials, be it an ICF or patient brochure or website design to a group of patient experts who provide feedback.  These review boards allow companies to ‘check the box’ – yes patients have reviewed our materials.  The impact of these review boards is quite limited and there is no partnership with patients.  

Some councils are a bit more engaged.  There is an iterative collaboration between the patient council and teams.  A robust engagement occurs throughout the process as materials are developed.  It might be via workshops or prototype development, but the level of engagement is much more collaborative.

I serve as a patient peer and am engaged very early by my teammates.  As an example, this asset was preparing to enter the clinic, and I participated in a monitor training session.  It was a unique perspective brought to this conversation as my concerns were not so much around the operational execution of the trial or a debate of the underlying scientific rationale, but rather representing potential patient concerns.  Ultimately, is the proposed trial and associated information being presented in a way that will allow patients to make an informed decision on participation?  As the patient peer, I always have the flexibility to bring one of my council colleagues who might be better positioned to address a specific question – e.g. – a patient with experience in a CAR-T study.  

Some companies have expanded this patient partnership even further, where a patient serves as an ad-hoc team member as well as serving on the council.  This ‘patient peer’ provides the team with direct access to the patient voice whenever it might be needed.  Some specific examples include:

  • Piloting a calendar app in support of a clinical trial;
  • Reviewing a disease education website for newly diagnosed patients;
  • Participating in clinical site training for monitors and investigators;
  • Designing and testing different device delivery prototypes;
  • Simplifying patient reported outcomes and questionnaires
  • Enabling decision making – e.g. – what does the patient/caregiver need to know to make an informed decision and its impact on improved retention rates;

Early input by the patient peer has proven invaluable to project teams in capturing the patient perspective early in the process.

  1. Leverage wearables/digital devices to provide timely data and insight:  The digital revolution provides many opportunities to reduce patient burden.  It’s easy today to capture health data on wearables – e.g. – heart rate, blood oxygen levels, sleep time and skin temperature are readily available.  We can track our physical activity – distance walked, flights climbed, minutes exercised, and calories burned, but we can also trend this data over time, providing our doctors with additional information and insight on our health.  Most individuals would not find this overly invasive or burdensome and would be willing to share this information with their medical teams if the data was useful.  However, if patients are asked to take their temperatures every day with a thermometer and then write it down in a diary, that might be seen as too burdensome relative to the value it would provide.

Let me provide a more specific example.  One of the key concerns associated with pancreatic cancer is patient weight loss.  Often this is associated with an inability to effectively process food.  I was told early in my treatment to focus on consuming calories, preferably ‘healthy’ calories in small meals throughout the day, but when in doubt, choose ice cream over salad (for some reason, my doctors don’t tell me that anymore).  It was important for me to weigh myself daily and call if I noticed a fluctuation in weight.  To be honest, it was a bit of a hassle to write it down and then bring that information to my appointments.  Alternatively, I could use a digital scale at home that would automatically upload my daily weight to the clinic.  My medical team would have this information available immediately.  In fact, they can spot changes that might warrant a check-in of some sort.  My burden is minimal and my only concerns are to take my weight consistently (same time of day, with or without shoes) and whether I am comfortable to share my information in this way.

But we can extend this analogy a bit further.  What if I took a picture of my food at each meal?  And there was an app available to capture what I was eating (we would need to ensure that patients had access to the technology to make this possible).  I now have information on what I am eating and my weight – could this information be useful to my medical team?  Maybe I add one more piece to the puzzle – one question each day on how I feel and what side effects I am currently experiencing.  A little more effort here, but still manageable.  As a patient, am I willing to spend the time and effort to provide my weight, a picture of what I eat and how I feel?  Technology makes it as easy as possible, but is it worth it?

This is the challenge – how much value does the patient get by doing this?  And is that value for this individual patient or value to improve the understanding of the disease?  Just because it is easy to gather more information, does not mean that we are adding overall value to the patient.    First, it is important for patients to receive feedback on the information being provided – that it is actually useful for them or other patients.  Otherwise, I am spending time and effort to provide this information but with no visible benefit.  Close the communication loop and be transparent with the patients.  

Second, there is insight to be gained from timely data capture.  If I am provided with a questionnaire to complete on my monthly visit to the clinic, the quality of my data may be suspect.  How did I feel since my last visit?  Well, I did experience a bit of nausea during the month and had some GI issues, but I don’t recall anything specific.  However, in the technology scenario above – where I captured my weight, my food intake and how I felt – I am reminded that I ate a spicy Mexican meal the day before I was feeling nauseous.  Perhaps my experienced nausea has little to do with my treatment or medication and everything to do with the fact that I just can’t handle spicy food anymore?

The opportunity to deliver transformative, improved patient care and value has never been greater.  Technology serves as the catalyst to both pursue and achieve this potential.  Outcomes can be dramatically improved by driving early detection, identifying excellent doctors, and developing personalized treatment plans.  Leveraging technology, be it genetic testing, improving access to healthcare for all patient populations, using advanced gene editing or immunotherapies or harnessing continuous data from wearables, serves as the flashlight on our smartphone that allows us to see in the dark park at night.  

Technology alone, however, is not the complete solution.  Healthcare – industry, physicians, payers, and regulators – must better engage patients and reduce the patient and caregiver burden.  Industry must co-collaborate with patient experts.  The goal must be to allow patients to make better, informed decisions on their treatment plans – through education, improved access to care/clinical trials and communicating effectively in understandable language.


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