HIMSS - Personal Health Records for People with Chronic Conditions

CAREGIVER INSIGHTS : Driving Personal Health Record (PHR) Adoption for Patients with Chronic Conditions

Sheetal DubeSenior User Experience ConsultantOctober 18, 2010

Presented at

2© 2009 EVANTAGE CONSULTING

IntroductionCaregiver Insights: Driving PHR adoption for patients with chronic conditions

A little bit about the project and why Evantage Consulting got so passionate about it…

Source: http://www.flickr.com/photos/36978292@N08/


Agenda

• PHR's & Caregivers• Evantage Research Methodology• Findings: Who Uses PHR's?• Findings: How & Why PHR's are Used - or Not• Conclusions


PHR & Caregivers Role


A PHR is typically a health record that is initiated and maintained by an individual

Image Source: http://www.idgp.org.auImage source: http://wiki.ihe.net/index.php?

Personal Health Record (PHR)


A EMR is a computerized legal clinical record created in care delivery organization

Electronic Medical Record (EMR)


PHR Providers

Provider Sponsored

Payer Sponsored

Employer Sponsored

Independent Products


Intended PHR Benefits

Empower patients > improve outcomes• Increase sense of control over health• Support timely, appropriate preventive services• Support healthcare decisions and responsibility for care• Verify accuracy of information in provider records• Support home monitoring for chronic diseases• Avoid duplicate tests• Reduce adverse drug interactions and allergic reactions

Source: National Committee on Vital and Health Statistics, 2006 http://www.ncvhs.hhs.gov/0602nhiirpt.pdf


Participatory Model

Individual Clinician 1

Care Plan

Clinician 2

Medical HistoryHealth conditionsLab resultsMedicationsAllergies

Observations of daily living

Personal Health Records

Medical Records

Medical Records


New Meaning of PHR

Roni Zeiger, Chief Health Strategist, Google, Health 2.0, SF, 2010


People with chronic conditions are more likely to use a PHR to take actions to improve their health

Image Source: http://www.flickr.com/photos/judybaxter/

California Healthcare Foundation Survey, 2009

PHR and Chronic Conditions


Source: http://www.fightchronicdisease.org/pdfs/2009AlmanacofChronicDisease_updated81009.pdf

133 million (45%) Americans have one or more chronic conditions

A quarter (26%) of Americans have multiple chronic conditions

Total US Population

45%have chronic

conditions

Chronic Conditions in America


75% of the $2.2 trillion spent on health care in 2008-2009 went to chronic conditions

Total Health Spending

75% Spent on chronic

conditions

Source: http://www.fightchronicdisease.org/pdfs/2009AlmanacofChronicDisease_updated81009.pdf

Healthcare Spending


PHR Market

600+ Personal Health Records Billions in installation and operating costs


Intended Overall Benefit

Medical HistoryHealth conditionsLab resultsMedicationsAllergiesProcedures

Personal Health Record

Create

Reduction in Healthcare SpendingHealthcareCosts

Investment

Patient EmpowermentHealth Benefit

Reference Point

Lab Results

Clinic Visit NotesMedication Change ODLs

WeightBlood PressureDietSleep

Update PHR

ODLs WeightBlood PressureDietSleep

Patient learns > takes positive actions > sees results > becomes more responsible

Correlation between ODL and Lab results

Patient learns impact of NEW medication on health

Correlation between Medication and ODLs

Source: Sheetal Dube, October 2010

Green text highlights the benefits

Orange text highlights the use


Quick Quiz

How many people in this audience have a PHR?


Reality Check

Only 7% adults reported using a PHR in 2008-2009

California Healthcare Foundation Survey, 2009 [ iHealthBeat: http://www.ihealthbeat.org/features/2010/survey-finds-benefits-of-phr-use-but-adoption-remains-low.aspx#ixzz11LXUKGsl ]


Why?


California Healthcare Foundation Survey, 2009 [ iHealthBeat: http://www.ihealthbeat.org/features/2010/survey-finds-benefits-of-phr-use-but-adoption-remains-low.aspx#ixzz11LXUKGsl ]

• Worried about the privacy of their information (75%)• Feel they don’t need a PHR to manage needs (61%)• Would cost too much (51%)• Would take too much time (38%)• They didn’t like computer (26%)

Barriers Cited By Non PHR Users


People with chronic conditions are significantly less likely than healthy adults to have access to the internet (62% vs. 81%)

http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx

Barriers Cited By Non PHR Users


People with chronic conditions are more likely to lack motivation to keep a PHR updated. Leading to significant impact on its effectiveness.

Source: Project work done by Evantage Consulting

Barriers Due To Health Condition


Key Change Agent

Caregivers


21% of the adult US population (44.4 million people) provide unpaid care to family member or friend

Total Adult US Population

21% caregivers

http://www.caregiving.org/data/04execsumm.pdf

Caregivers in America


National Alliance for Caregiving and AARP, Caregiving in the U.S. 2004.

7 out of 10 family caregivers are caring for someone 50 years of older

Caregivers Role


0

5

10

15

20

Who prepares for the doctorappointment? Like rememberingappointment dates and collectinginformation to discuss w ith the

doctor.

Who coordinates care betw een thedifferent doctors?

Who answ ers the doctor’s questions(majority) during clinic visits?

Patient Caregiver Jointly(patient&caregiver) Other (Relative/ friend)

Caregivers play a significant role in managing a patients health care needs

Source: Online survey conducted by Evantage Consulting with 32 caregivers and patients, August – September 2010.

Caregivers Role


Research Question

Can caregivers play a role in driving PHR adoptions and improving the health outcomes of the large number of Americans living with chronic conditions?


Participatory Model

Individual Clinician 1

Care Plan

Clinician 2

Medical HistoryHealth conditionsLab resultsMedicationsAllergies

Observations of daily living

Personal Health Records

Medical Records

Medical Records

Caregiver + Patient (chronic condition)


Research Methodology


• Highest potential subset of PHR users • 50+ old chronically ill patients and their caregivers across US

• People who have used a PHR• Provider and Standalone PHR like Google Health, Microsoft HealthVault

• Gather qualitative feedback• Phone interviews with patients and their caregivers

Research Outline


• Who is using a PHR?• Why are they using a PHR?• How are they using a PHR?• How did it fit in their daily life?• What works and what doesn’t?

Interview Focus


Research ProcessOnline Survey, 32 participants*

Nationwide phone interviews, 20 participants*

Caregivers 14

Patients 6

Caregiver - Patient pairs 5

PHRs used

Child (5), Spouse (3), Relative (2)Grandchild (2), Mother **(2)

Kidney, Heart, Hypertension, DiabetesCancer, Dementia, Genetic Disorder

Husband - wife (3), Parent – child (1)Grandchild - Grandparent (1)

Google Health (6), Microsoft HealthVault (2),Provider PHRs (2), Payer PHR (1)myPHR Paper (1), Spreadsheets (7)

Caregivers 27

Patients 5

States represented CA (4), NY(2), NJ(2), WA, IL, TX, MI7

Research was conducted by Evantage Consulting, August and September, 2010* All participants met the study criteria.** Inputs from two mothers who had cared for a chronically ill child was included. Their experience with PHRs was considered relevant to the research.


‘Who’ is using PHRs?


David & Linda – Wife

Image Source: http://www.flickr.com/photos/46632302@N06/

• David & Linda are married for 30 yrs, both are between 50–74 yrs and their children live 300 miles away.

• David has had chronic hypertension for 20+ yrs. Five yrs ago he was diagnosed with high cholesterol and for the last seven months his blood pressure has not been stable.

• David has been advised to take his prescription medication everyday. He was also asked to monitor his weight, blood pressure and diet on a daily basis.

• He is retired, tends to be a bit forgetful and doesn’t like computers.


David & Linda – Wife• Linda is extremely organized, works full time and

plays a key role.

• Her responsibilities include monitoring David's symptoms, providing updates to his doctor, researching medication interactions and new drugs.

• Two years back, Linda created a spreadsheet to track David’s weight and blood pressure. She managed to coax David to take responsibility of updating this daily.

• Linda tried Google Health to track David’s vitals. But David preferred using the spreadsheet - it did not require him to be online. Linda continues to Google health to record David’s medications.


David & Linda – Wife

Shared responsibility

Caregivers needTo manage the patients health needs by sharing some of the responsibility with them

Patients needTo help the caregiver manage their needs


Image Source: http://www.flickr.com/photos/seandreilinger/

• Pearl is 81 yrs old and lives by herself. She has had type 2 diabetes for the last 10 yrs. Recently she was diagnosed with dementia.

• Jason is 34 yrs old, married with 2 children. He loves his grandmother and feels that it is his responsibility to take care of her. He lives 30 miles away.

• Twice a week he visits his grandmother to clean her house, do grocery shopping, other errands, cook, take her for walks and fill her pill box. While he is there, he also takes her blood pressure and glucose readings to make sure they are within range.

Jason & Pearl - Grandson


• Every month, Jason takes his grandmother to the doctor. He discusses her health condition and lab results (if any) with the doctor and changes her medication and activities accordingly.

• As a follow up, he makes sure he updates Pearl’s medication list on Google Health with all the adverse drug reactions she had in the past. He also integrates the online pharmacy via Google health to make it easy to order her medications.

• Since he lives away, his key concern is to ensure that his grandmother takes her medication on time and does not have an adverse drug reaction.




Caregivers responsibility

Caregivers needTo stay updated on the patients condition remotely, especially medication adherence, food intake and adverse drug reactions


http://www.flickr.com/photos/46632302@N06/

• Florence is 81 years old, she has had asthma, hypertension and arthritis for 10+ years. She moved in with her daughter Sharon a year ago.

• Sharon is 49 years old, works full time and manages a family of four.

• For her mother, Sharon choose a provider that offered home visits. She also takes the help of paid caregivers twice a week.

• Sharon's uses the providers PHR, the paid-caregivers diary and her own observations to keep track of her mothers health condition.

Sharon & Florence – Daughter


• Sharon find the providers PHR very convenient. She is able to see the doctors notes the day he visits, mail the doctor with questions she might have, view lab results, vital signs and set up appointments.

• Sometimes she tries to correlate the vital signs captured by the doctor and the paid caregivers.




Caregivers responsibility

Caregivers needTo streamline the information flow between the provider, paid-caregivers and her own observations


‘How’ and ‘Why’ PHRs are being used?


Research Finding #1

Not all caregivers play the same role in managing the patients health needs

Role varies based on a number of factors• Patients health conditions, age, emotional wellbeing or • Caregivers health, commitments and motivation.


Research Finding #2

Consumer needs change based on the caregiver-patient responsibility model

Lone Responsibility Shared Responsibility

Patient responsible

Caregiverresponsible

Caregiver plays the primary role

Patient plays the primary role



Intended Benefits

Medical HistoryHealth conditionsLab resultsMedicationsAllergiesProcedures


Create


Investment


Reference Point

Lab Results



Update PHR










Observed Benefits

Medical HistoryHealth conditions

MedicationsAllergies


Create


Investment


Reference Point

Lab Results



Update PHR










Research Finding #3

PHRs are serving as data storage tools instead of patient empowerment tools

• 6% used a PHR and took actions to improve health• 60% used a PHR to ‘only’ store information • 13% stopped using a PHR after trying it for a few months• 20% evaluated a PHR but did not sign up

Other studies indicate higher patient empowerment via online search


Research Finding #4

PHRs are not replacing spreadsheets• 73% used a spreadsheet to track vital signs• People who had used a spreadsheet did not want to use a PHR to track vital signs

• Inability to customize based on individual requirements• Cumbersome to login everyday or regularly• Additional effort of learning a new tool• No additional value perceived

Note that the study participants were probably the ‘more’ motivated PHR users


Research Finding #5

Only a fraction of the features are being used in independent PHRs

On Google Health, 75% of the features had not been used by anyone. • The ones that were used were - Medical contacts, medication, allergies, online

pharmacy and print

Everyone used additional tools to manage needs• 75% used the internet to look for health information• 66% used a cell phone to manage doctor appointments and medication refills


Google Health


Research Finding #6

Data privacy is a big factor for low use of an independent PHR

People opted to view paper records instead of accessing their lab result online via Google Health or HealthVault

“ I am not comfortable putting my family information out there, I think I want my privacy.” Family member had Dementia, caregiver was concerned about getting solicited by advertisers.

“ This information is only as secure as my gmail.” Caregiver was concerned that it would be easy to hack this site.

Caregivers who used a provider PHR, liked accessing lab results online


Research Finding #7

Caregivers and patients experienced benefits of using a tool to manage health information

• Allowed sharing of responsibility • Spreadsheets made them alert and organized• PHR (especially provider PHR) freed up their time and provided a sense of

security• Secure messaging, scheduling online appointments and ordering

medication online - free up the caregivers time.• Access to physicians contact information, medications, allergies, lab

results and past procedures - provided sense of security and comfort.


Conclusion


Conclusion

Caregivers can play a role in driving PHR adoption.

However to improve health outcomes of the large number of Americans living with chronic conditions, caregivers and patients need simpler and more effective PHRs that can fit in their everyday lives.


Designing a Simple and Effective PHR

Suggestions for PHR designers• Account for the peoples* varied needs for managing health information• Highlight how data privacy is being maintained• Ensure it is easy to set up for people* who will use it • Ensure it is easy to use on a frequent basis• Provide obvious correlation between patient’s actions and health condition • Allow people* to act on their health information and take positive health actions

*For this study ‘people’ refers to patients with chronic conditions and their caregivers


Evantage Consulting

• Evantage Consulting helps business leaders in healthcare and consumer products and services create and market breakthrough new products and services.

• We specialize in bridging business analysis, user experience and analytics to deliver new services and products that are profitable, usable and engaging.

212 Third Ave. North, Suite 400Minneapolis, MN 55401612-677-0640 (phone)612-677-0641 (fax)


Questions ?

Sheetal [email protected]

Questions?

HIMSS - Personal Health Records for People with Chronic Conditions

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Transcript of HIMSS - Personal Health Records for People with Chronic Conditions