Novel Approaches for Patient Engagement Through Technology Nov 2013

Novel Approaches for Patient Engagement Through Technology

Patient Engagement in Clinical TrialsCleveland Clinic Lou Ruvo Center for Brain Health, 2 Nov 2013Rajiv Mehta • [email protected] • 650/823-3274

Hello ... I appreciate the invitation to share my views.Yesterday we discussed how to overcome the challenge of recruiting patients to clinical trials.The next critical issue is: How do we keep them engaged, and adherent to their care plans?That’s what I am going to focus on.

Rajiv MehtaTiE & IEEE: QS the next frontier in mobile healthcare, 19 Sep 2013 2

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes”

Marcel Proust

As you know, I'm not a physician or medical scientist, and have no experience in clinical trials.Which is a good thing.As novelist Marcel Proust noted "The real voyage of discovery consists not in seeking new landscapes, but in having new eyes."To discover “novel approaches” it is often necessary to take a different perspective.

While healthcare has studied tools for patient adherence, I have studied those very same people but looked at them not as patients but as people caring for themselves and their families.

Rajiv Mehta • [email protected]

Traditional perspective:Doctors & Patients

3

Person

HealthcareProfessional

The traditional perspective for health technology sees healthcare professionals and people (also known as patients)


Doctors & Patients & Technology

4

Person

HealthcareProfessional

MOSTHealth technology efforts

SOMEPatient Engagement

TelemonitoringPatient Education

PHRs

?

The vast majority of technology for health is oriented towards the needs of health professionals. Patients are not users of such tools; they’re not in the picture.Some technology is geared towards doctor-patient interactions: tele-monitoring, and so forth.Relatively little is geared towards people’s own use; when doctors are not in the picture.


For most of our lives (>99%) we take care of ourselves

5

Person

This is surprising because for the vast majority of our lives, health professionals are NOT in the picture. For most of your life, you are being taken care of by yourself and your family.



6

US Veterans Health Administration• “The gold dot represents the average number of minutes

(100) a patient spends with a provider per year and the white represents 525,600 minutes in a year”

This point was made in a diagram created by the VA. They note that the average patient spent only 100 minutes a year being cared for by a professional — that’s the gold dot. The white space is the rest of the year, the other 99.98% of the year.

It turns out that this diagram is not accurate — the gold dot is too big.



7

This diagram, by a friend who has Parkinsons, shows the same thing. In 2012 she only spent 1 hour with a health professional. The other 8,765 hours she was on her own.

But, this diagram is accurate. Can you find the gold dot?



8

It's there on the right, at the end.



9

Health Technologyfor the other 99%

Where is the health technology for that other 99%?

Health professionals tend to view patients from the perspective of that gold dot.... people who are most unhealthy ... and perhaps most unable or unwilling to care for themselves ...... trying to find technologies that will motivate, engage and be helpful to the most difficult patients ...

But, does it make sense to start with the hardest problems? Should one expect medical students to learn open heart surgery before they learn how to care for a scratch?

What if we start with an easier challenge? Can we make technologies that are able to help the most engaged and capable patients?


I've been trying to do that in two related spaces.One is a group called the Quantified Self ... for the moment think of this as a group of super-engaged patients.The other is a series of tools for self-care and family caregiving that I’ve developed over many years.

Rajiv MehtaTiE & IEEE: QS the next frontier in mobile healthcare, 19 Sep 2013

Quantified Self

11

Rajiv Mehta • [email protected] 12

Community of self-trackers and developers Self-trackers tell Personal Stories

• What I did. How I did it. What I learned.• Wide range of topics

- Health, athletic performance, productivity, emotions, finance, ... traffic, love life, books, entertainment ...

Developers provide Tools

To tell you briefly about Quantified Self, it is a community of people who track various aspects of their lives.The basic motivation is that you might learn something through this self-reflection, and make an improvement in your life.The community includes those developing technologies for such self-tracking.QS is both inspired by and inspires tool developers.


September 10, 2008

From an initial meeting of about 30 people in a home near San Francisco ....


USA-WestSan FranciscoQSXX-SFSilicon ValleySan DiegoSeattleLos AngelesNorth BayPortlandHawaiiBerkeleySanta BarbaraDavis/SacramentoBoulder/DenverSan FranciscoSalt Lake CityPhoenix/ScottsdaleReno/TahoeOrange County

USA-EastNew YorkBostonQSXX-BostonWashington DCChicagoPittsburghPhiladelphiaLouisvilleHoustonRaleighVermontAustinNashvilleMinneapolisDentonDallasAlbanyAtlantaHuntsvilleMemphisChampaign, ILLansingIndianapolisSouthwest FloridaGrand RapidsCharlotteColumbusClevelandCincinnati

EuropeAmsterdamLondonParisBrusselsEdinburghSpainDublinMunichBerlinHelsinkiCzech RepublicHamburgAachen/MaastrichtGenevaPolandBudapestStockholmCopenhagenMilanStuttgartCologneGroningenAthensBerlin (English)ZurichRuhrgebietOslo

AfricaCape Town

AustraliaSydneyMelbourne

South AmericaRio de JaneiroBuenos AiresBogota

CanadaTorontoVancouverMontrealOttawa

AsiaTokyoBeirutSingaporeDubaiBangkokBeijingTaiwanShenZhenHong KongSeoulBangaloreMumbai

CONFERENCESMountain View (May 2011) • Amsterdam (Nov 2011) • Stanford (Sep 2012) • Amsterdam (May 2013) • San Francisco (Oct 2013) • Amsterdam (May 2014)

... QS has grown to roughly a 100 groups worldwide, with a meeting taking place somewhere almost every day.

These people, especially the self-trackers, are VERY engaged in managing and improving their lives. They are willing to put in a lot of effort into this activity ... as I said earlier, you can think of them as super-engaged patients ...Much can be learned from observing this group.


But first, just to help you be aware of the range of consumer technologies available today, here’s a sampleThis shows devices, apps, kits and websites for measuring swimming, movement, posture, sleep, brain waves, mental performance, and the personal biome.


Technology & Self-learning

! NOT EASY! BUT VALUABLE! How to choose?! Usually! How to use?! learn! What does it mean?! something!

For our purposes today, I’ll summarize the experiences of five years of QS this way:Even these motivated, smart early-adopters have difficulty knowing what tools are available, choosing the right ones, making best of use of them, and making sense of the data, and achieving their goals.On the other hand, these self-trackers almost always learn something valuable from the experience, gain some insight into making their lives better.

Health Hack Day, Stockholm, 17 May 2013 Rajiv Mehta 17

Health Technologyfor the other 99%

Tools are crude, life is complex

Imagine what we could do with better tools.I’d like to share with you a framework that guides my thinking about the potential for technology.


Self-care / Family-care Framework


A diagram of health self-management

19

Person

Health / Wellbeing

Disturbances / Environment

take(s) Actions (Daily Living)

affec

t

Goals& Plans

affect

Observations made byNew observations ... ... suggest new Actions ...

Here is a diagram of a person taking care of himself.

The person has some desired health goals, and a care-plan to achieve these goals. On a day-to-day basis he carries out these actions, and they have some impact on his health. His health is also impacted by his environment. Noting his actual health compared to his goals, he may make some changes.


HCPs may have a strong influence on the person’s activities

20

Person

Health / Wellbeing


take(s) Actions (Daily Living)

affec

t

Goals& Plans

Observations made byNew observations ... ... suggest new Actions ...

HCP

info

rm

affect

What the person chooses to do and what he considers proper goals are influenced by his doctors and other health professionals.

This is a nice, simple framework.


It’s complicated ...

21

There are inner loops of execution, with many opportunities for failure (e.g. “non-adherence”)

Person

Health / Wellbeing


take(s) Actions (Daily Living)Observations made by

affec

t

to accomplish

Goals& Plans

Tasksaffect

New observations ... ... suggest new Actions ...

affect

HCP

info

rm

Unfortunately, real life is more complicated.

First of all, the person may not carry out his tasks exactly as planned. This “non-adherence” naturally impacts his health and wellbeing.


Endless torrent of mundane tasks

22

Day-to-day (even hr-to-hr) tasks for health, wellness,... life in general

Mundane but varied

Appointments, Bathing, Biometrics, Chores, Cleaning, Companionship, Cooking, Dressing, Eating, Errands, Exercise, Grooming, Listening,

Medications, Moving around, Observations, Planning, Shopping, Socializing, Symptoms,

Therapies, Toileting, Transportation, ...

Never ending

Overwhelming!

This failure of execution should not be surprising. While each little health-related activity seems simple in isolation, together they can be overwhelming. Care at home is not just about taking a pill on time ... it’s changing diapers and cleaning sheets, it’s preparing special meals and helping with exercise, it’s tracking symptoms and providing emotional support. It's a wide variety of activities, that can happen many times each day, for months and years.


Endless torrent of mundane tasks

23

MEDICATIONS6a 9a noon 3p 6p 9p midnight

Insulin NovolinInsulin Novolog

MetforminACE InhibitorMulti-vitamin

Ibuprofen

Blood glucoseBlood pressure & pulse

Weight

EXERCISEWalk/Swim

YogaDIET/FOOD

Food JournalCarbs

OBSERVATIONSSleep

Excessive thirstExcessive sweating

Mood

BIOMETRICS

Herbal supplements

THERAPIESFoot massage

Breathing exercise

6a 9a noon 3p 6p 9p midnightMEDICATIONS

Morning supplements (6)Albuterol (nebulizer)

Hypertonic saline (nebulizer)Pulmozyme (nebulizer)

Tobi antibiotic (nebulizer)Pancreatic enzymes

AdvairNoon supplements (4)

Evening supplements (4)Bedtime supplements (4)

Caloric shakeTHERAPIES

VestAcapella

BIOMETRICSWeight

OBSERVATIONSSleepMood

Coughing episodeOTHER

Clean / Sterilize nebulizers

Here are some examples of the daily health regimens of some people I have worked with. The x-axis covers about 18 hours of the day. The y-axis lists their activities. The top right is a friend’s chemotherapy regimen. Bottom right is a person with cystic fibrosis. On the left is an organ transplant recipient.

Even without being able to read the details, you can see that there’s a lot going on. And it is very hard for people to remember and keep track of all this stuff.


It’s more complicated ...

24

And outer loops — health is a means to higher-level life goals

Person/Family

Health / Wellbeing



affec

t

to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect

HCP

info

rm

And all of that has to fit into regular life, which adds it own complexity. Health is not the only priority, and often other aspects of life — work, family and social responsibilities, and your personal happiness — take higher priority.


Most people aren’t hermits

25

They belong to family groups whose actions are intertwined and have strong interactions

Person/Family

Health / Wellbeing



affec

t

to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect

HCP

info

rm

In addition, most of us are social, and our lives are interwoven with others — family, close friends, and colleagues.

These networks ... your family, your personal health ecosystem ... that's where most health care really happens.


Networks of care

26

We take care of ourselves. We take care of others. And they in turn take care of us. We strongly influence each other.

We are social animals, and our interconnectedness is often so deep and so ingrained that we can forget how reliant we are on each other.


Real-world care networks

27

X

X

These diagrams are from research I did last summer. They show the care networks for two people that were interviewed. The person in the top diagram is a single mother caring for both an aging mother, who lives in a retirement home nearby, and an autistic son, while also raising another child. The person in the lower diagram is caring for a spouse with Alzheimers, while also dealing with his own health issues. In both cases, there’s just a lot of people involved.And, it takes a lot of effort to keep everyone coordinated and informed.


Often many external influencers

28

Person/Family

Health / Wellbeing



affec

t

to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect

Influencers(HCPs, “alternative” practitioners,media, extended family & friends)

info

rm

Also, external influencers include much more than healthcare professionals. There are many alternative health providers, the formal and informal media, neighbors, etc. who have some impact.


Framework for self-care / family- caregiving technology opportunities

29

Person/Family

Health / Wellbeing



affec

t

to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect


info

rm

This diagram, then, provides a framework for thinking about health technology opportunities, a way to see how we might help the person, the family take care of themselves.


Much happening in certain areas

30

Person/Family

Health / Wellbeing



affec

t

to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect


info

rm

Inform

inform

create

Measure

inform

inform

Analyze

Communicatesupport

inform

supp

ort

There is a lot happening in certain areas:* There are many attempts to improve patient-provider communications* There are lots of efforts to bring better and more personalized information to the public* And the Quantified Self movement is the home for innovations for measuring ourselves and analyzing the data

In other forums I've gone into much more detail for these areas. For today, let me just say that despite all that IS happening, our needs are still barely being met. There's a long way to go.


Missing: Help to do the doing — “productivity” tools

31

Person/Family

Health / Wellbeing



affec

t

to accomplish

Goals& Plans

Life affects

Tasksaffect


affect affect


info

rm

Inform

inform

create

Measure

inform

inform

Analyze

Communicatesupport

utilize

support

Enable

inform

supp

ort

For now, let me direct your attention to what’s really missing — technology that helps people “do the doing”. Think of it as productivity tools for personal health.

To me it’s astonishing that this space has received so little attention. If people can’t do the doing, it really doesn’t matter how brilliant their doctor’s advice is or whether they’re using amazing sensors. It would be like a hospital with great physicians and the latest lab technologies, but which lacks beds and pencils, rotation schedules and telephones.

Rajiv MehtaTiE & IEEE: QS the next frontier in mobile healthcare, 19 Sep 2013

Unfrazzle

32


2007 2009 2011 2013

Zume Life

Zume Life

Tonic Unfrazzle

This is what I’ve been working on for the past several years. Products that help people do-the-doing. The learnings from each product contributing to the next. The most recent is called Unfrazzle.


Remember and track all care responsibilities & Stay in-sync with co-caregivers

Unfrazzle is an app, for iPhone and Android phones and tablets, that helps make everyday care easier.It helps you remember and keep track of all your care responsibilities, whether for yourself, your mother, your son, or your pet cat. And it helps you and your family coordinate these activities.

I'll show you more in a moment, but these four screens show the essence of the app: the people in your health ecosystem; your self-care regimen; and events that you do for yourself and others.It is meant to be setup by the user himself, or by someone else they give permission to.


A couple managing early-stage dementia

35

Patient (Peter)Early-stage Alz

Sometimes at home aloneRequires clear instructions

- Takes own meds- Does household chores

Dogs

- Feeds dogs

- Walks dogs

Wife (Wilma)Works full-time

Own health issues- Manages own health

- Lays out clothes

- Lays out meds

- Writes instructions

- Tracks his symptoms,

behaviors, etc.

- Flea medication- Backup

Son (Sam)Lives far away

- Backup- Backup

Let me share with you a couple of examples, somewhat simplified, but essentially true to the actual situations. In this case, “Peter" is in the early stages of Alzheimer's, still capable of managing on his own as long as he has clear instructions. He's often at home alone, cares for the family's dogs, and enjoys doing small household projects."Wilma", his wife, works full-time, has her own health issues, while also paying close attention to Peter. Every morning and evening she has to make sure everything is set up properly for Peter to manage, and leaves him a daily note with instructions. And she keeps track of all his behavior changes and symptoms.

Their son lives far away, and so can help only occasionally, but tries to stay aware of the situation so he can easily step in.

Peter, Wilma and Sam are all using Unfrazzle.


Peter’s Journals Peter’s EventsWed, Sep 18, 2013

Peter’s Family

These are screens from Peter’s use of Unfrazzle ...Wilma, or sometimes Sam, setup and maintain the app for him, but day-to-day Peter can use it.


Peter’s EventsWed, Sep 18, 2013

Peter’s Family Peter’s Journals

His regimen includes several medications that he gets reminded to take. As you'll see, he also gets a reminder to look at the note Wilma has written him.


Peter’s JournalsPeter’s Family Peter’s EventsWed, Sep 18, 2013

Here are Peter's Events on Sep 18. He has checked off taking his morning medications. He’d gotten reminders to walk and feed the dogs, and checked-off those to-dos. ... scrolling further ...


Peter’s Journals Peter’s EventsWed, Sep 18, 2013

Peter’s Family

Later in the day he'll get reminder alerts to check Wilma’s note, and for more dog-care and medications.

With clear reminders and instructions from Unfrazzle, Peter hopes to maintain his independence for a little while longer.


Wilma’s Events Wilma’s FamilyWilma’s Journals Event entry

Let’s take a look at Wilma’s use of Unfrazzle ...


Wilma’s Events Wilma’s FamilyEvent entryWilma’s Journals

Wilma’s Journals include a couple of things for her own pain medication and tracking her knee pain.She also has the chores she does for Peter — putting out his meds and clothes, and writing him a noteAnd she keeps observations about Peter, that she can later share with his doctor.


Wilma’s FamilyWilma’s Journals Event entryWilma’s Events

We see that Wilma has checked off taking her own medications and her morning chores for Peter.She has also noted that he’s irritable this morning.


Wilma’s Events Wilma’s FamilyWilma’s Journals Event entry

Here’s what that event entry looks like ... there is a lot of flexibility in how these journals are set up. This is just one example.People can use their own language. They can set it up however they feel comfortable.I just want to highlight the space where Wilma has entered “Extra grouchy this morning”. You can always include such free-form notes.

Wilma has given Sam access to all the Peter-related items, so he can stay aware of what’s happening, including Peter’s moods.


Wilma’s EventsWilma’s Journals Event entry Wilma’s Family

Wilma can choose to look at other family member’s info, to whatever extent they’ve given her permission.So, while she is at work, she can see if Peter has checked off taking his meds, walking the dogs, etc.And so can Sam.

Having this window into Peter’s activities helps Wilma a lot. Knowing that she can look and see if Peter’s carried out what he’s supposed to do helps her be more relaxed.And Sam is better able to step in and help when he’s needed.


A family provides 24x7 care

45

Patient (Mom)Late-stage Alzheimer’s

At homeRequires 24x7 care

- Medications- Feeding- Bathing- Toileting / Depends- Chores- Biometrics- Symptoms / Observations- ...

Son

Daughter-in-law

F&F-1

Paid-1

Paid-2

Take

turn

s

F&F-2 F&F-3 Paid-3 Paid-4 ...Occasional caregivers

In this second example, "Mom" is no longer able to care for herself. She requires full-time care. Five people — her son, daughter-in-law, two paid caregivers, and another family member — take turns. There are also several other family, friends and professionals who provide respite.

Without Unfrazzle, the family kept a large 3-ring binder of to-dos and observations. The binder was always with Mom. It was a hassle to keep it updated as Mom’s regimen varied from day-to-day, and it made it impossible for the son and daughter-in-law to stay abreast of what was happening at home.


Mom’s Journals

In this case, all the caregivers use the same account to note their caregiving activities and observations. This makes it easier for them all to stay current on her changing regimen, and it allows the son and daughter-in-law to stay aware of what's going on.

There are many, many things the caregivers do for mom. This is a partial listing. As you can see it includes: meds, chores, observations, etc.


Mom’s Events

In the morning, the caregiver who is with mom makes a note of who he or she is.And then proceeds in order through different activities.These have times assigned to them, but only to give a sense of the sequence that should be followed.At 11:30, there’ll be a reminder alert to encourage the caregiver in charge to review that morning’s activities — to make sure everything has been done and recorded.


Mom’s Events

Let’s briefly look at some of the entries.


Mom’s Events

To record the caregiver-in-charge, the user selects from a list of names.


Mom’s Events

There’s a journal to record whether or not the diaper was changed, and the condition of the diaper, using a 1-10 scale.


Mom’s Events

To record meals, there’s a text field to note what was offered, and a scale to note how much of it was eaten.

Using Unfrazzle this way, each caregiver finds it much easier to know exactly what they’re supposed to be doing.And the son and daughter-in-law have a much better sense of control.


App for iOS & Android (phones & tablets)• Remember and track all care

responsibilities• Stay in-sync with co-caregivers• Fully customizable by users

Effectiveness improved by• User training & support to tailor

to family’s needs

To summarize ... Unfrazzle is an app for smart phones and tablets that helps makes day-to-day care management easier. It is very flexible, to allow you to use it to manage all your care activities and to coordinate with other caregivers. Like any other powerful tool, things go much better if users are well-supported, especially initially. Once they learn how to leverage it for their own unique needs, it is easy for them to maintain. With Unfrazzle, users are able to be more adherent to their care plans. Most importantly, people use Unfrazzle because it reduces their mental stress.


Closing



54

Support & Empower patients for self-management• Design for patients’ and family caregivers’ actual needs (not

just those researchers and clinicians are most interested in)• Design for ease, comfort, delight

- Ensure support of clinical objectives through smart design, not through burdening patients & families

• Design and provide the whole experience- Quality of support, coaching, etc. as important as quality of technology

To close, I believe strongly that there is huge potential for technologies that make it easier for people to follow their care plans, and to take better care of themselves.

For this potential to be achieved, the technologies need to be designed such that they support and empower patients and families.Their needs must be addressed, not only the things clinicians and researchers care about.We must take on the design challenge to ensure that we are able to meet clinical and research objectives, but without increasing their burdens.I also cannot stress enough the importance of designing and providing the full service. There is a mistaken belief that brilliant technology stands alone. The best only feels that way because someone has taken the trouble to design the magic.



55

Support & Empower patients for self-management• Design for patients’ and family caregivers’ actual needs (not

just those researchers and clinicians are most interested in)• Design for ease, comfort, delight

- Ensure support of clinical objectives through smart design, not through burdening patients & families

• Design and provide the whole experience- Quality of support, coaching, etc. as important as quality of technology

Great design, great technology ... like great science ... requires talent and resources

Alzheimer’s is costing society hundreds of billions of dollars a year. We’re spending hundreds of millions in the search for better treatments. If that money’s not to be wasted ... I suggest that we be equally serious about developing technologies for the home.

Thank you

Rajiv Mehta • [email protected] • 650/823-3274

Novel Approaches for Patient Engagement Through Technology Nov 2013

Health & Medicine

Transcript of Novel Approaches for Patient Engagement Through Technology Nov 2013