Download Consumer Power to Build Better Health Systems

APRIL 2015
Consumer Power to
Build Better Health
Systems
GLOBAL PERSPECTIVES ON INTEGRATING THE CONSUMER VOICE
ACROSS HEALTH SYSTEMS
WITH SUPPORT FROM:
CONTENTS
EXECUTIVE SUMMARY
3
KEY THEMES 6
Break down silos among
consumer groups
page 6
Foster open institutional and
policy decision-making
page 7
Elevate the patient
experience in measuring
health outcomes
page 9
Harness digital networks
page 10
Design and deliver care
collaboratively
page 8
Empower consumers and
patients with data
page 11
OPPORTUNITIES13
1
2
3
Establish an Engaging
Consumers across Health
Systems Working Group
Enhance the utility of feedback
from consumer review online
portals for hospital and
clinical settings
Develop learning resources
to help health institutions work
with consumer groups
4
5
6
Invest in cultivating
patient-centered attitudes
among future health leaders
Host a series of multi-national
workshops to share lessons
about patient reported
outcomes measures
Make health reporting
data platforms more
actionable
REFERENCES15
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 2
“Nothing about us, without us”
This philosophy and rallying cry, used by consumer*
advocates globally, has never been more relevant to the US
health system. The Affordable Care Act is moving US health
care to address population health in the environments in
which consumers live, learn, work and play. The rising tide
of chronic illnesses demands intensive self-care and heath
awareness in individuals’ daily lives. Finally, consumer choice
has become a powerful force in the US health ecosystem as
the wealth of information available online about health topics
such as insurance plans, hospital quality, patient satisfaction
and medical knowledge has grown.
To address these changes, health care professionals need to
know about consumers’ lives, needs and experiences more
than ever. Now is the time when the US health system must
be redesigned to treat the whole person rather than just the
maladies he or she may have; it is the time to build a culture
of health. Integrating the consumer voice across the health
system is, therefore, crucial. This report outlines ways in which
the consumer perspective can be better incorporated into
institutional decision-making, care design and delivery, health
outcomes measurement, digital networks and data use.
A unified consumer voice can provide valuable insights into
the design and delivery of health care to maximize both
clinical and quality of life outcomes. For example, in the 1980s
and early 1990s, HIV activists, pharmaceutical companies
and governments worked together to secure better health
rights and timely access to new treatments, ultimately altering
the course of the AIDS epidemic.1 More recently, consumer
engagement has played a critical role in improving quality at
the Beth Israel Deaconess Medical Center in Boston, where
consumers sit on patient and family advisory councils and
participate directly in hospital decision-making.2
have more than a token amount of power and influence” in
these spheres.3 Entrenched power dynamics can limit how
open institutional leaders are to consumers’ perspectives and
how comfortable consumers feel sharing their views in those
settings. Additionally, consumers may not always have the
information or support they need to assess the quality of care
being delivered and form recommendations commensurate
with the complexity of the institutional problem at hand.
As patient and consumer advocates, policymakers, hospital
administrators, insurers and others seek to open doors wider
to consumer involvement in health decision-making in the
US, they can learn a great deal from global efforts that have
succeeded in the same pursuits. For example, in Germany,
patient representatives set government agendas and drive
solutions to consumer issues by collaborating directly with
payers and providers as equal members on Germany’s highest
health decision-making body, the Federal Joint Committee. In
the UK, the private sector and England’s National Health System
(NHS) joined forces to build the iWantGreatCare website, a
trusted country-wide resource that presents real-time data on
quality and patient satisfaction in an easily digestible format
to patients, consumers, providers and hospital administrators.
These experiences can help answer some of the pressing
questions about how to apply the consumer voice to turn
the tide from disease-focused to people-focused care in the
US. How can the consumer perspective add the most value
to different components of the health system, such as policy,
health intervention design and technology? What are the best
ways to institutionalize the consumer voice in these channels?
Where and how have such efforts already succeeded in
improving health outcomes? What can the US learn from those
examples?
While consumer groups have become a fixture on many
pharmaceutical, hospital and payer advisory boards, they
often do not have the opportunity to exert meaningful
influence. As Kristin Carman and her colleagues noted in
their 2013 Health Affairs article, “It is still rare for patients to
* A note about the use of “consumer” and “patient” in this report: While all patients are consumers of health care, not all consumers are patients. We define “patient” and
“consumer” as such: patients require interaction with the health care system due to illness or injury, whereas consumers can be healthy and make elective decisions about health
services and prevention. To address current health challenges, including the rise of chronic diseases, these roles should overlap closely across health systems so people are
empowered to address health holistically. This perspective guides our use of “patient” and “consumer” throughout the report.
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 3
To begin to answer these questions, Rabin Martin hosted a roundtable of 13 consumer engagement experts in Berlin, Germany,
in October 2014 during the World Health Summit with support from the Robert Wood Johnson Foundation. The following
participants represented eight countries and a range of perspectives, including those of patient and consumer advocates,
the private sector, health technology and policy experts, NGOs and providers:
•Dr. Alexander Geissler | Senior Research Fellow, Department of Health Care Management at the Berlin University of
Technology | Germany
• Tenley Ghan | Senior Associate, Rabin Martin | USA – FACILITATOR
• Johan Hjertqvist | Founder and President, Health Consumer Powerhouse | Sweden
• Rebecca Hoppy | Managing Director, Rabin Martin | USA – FACILITATOR
• Robert Johnstone | Board Member, European Patients Forum | UK
• Dr. Ozge Karadag Caman | Hacettepe University, Institute of Public Health | Turkey
• Jacqueline Mallender | Partner, Optimity Matrix | UK
• Dr. Mahiben Maruthappu | Imperial College London | UK
• Alison Moore | Associate, Rabin Martin | USA – FACILITATOR
• Dr. Lloyd Nash | Chair & Co-Founder, Global Ideas Forum | Australia
• Dr. Phillip Phan | Professor and Executive Vice Dean at The Johns Hopkins University Carey Business School and Core
Faculty at the Johns Hopkins Medicine Armstrong Institute for Patient Safety and Quality | USA
• Dr. Imran Qureshi | Executive Director, Doctors Advancing Patient Safety (DAPS) Global | UK
• Sophia Schlette | Consultant, health systems knowledge management | Germany
• Jan Schmitz-Hübsch | Director of Business Development & Projects, Munich Health Daman Holding | UAE
• Erica van der Schrieck-de Loos | Senior Advisor, CBO Dutch Institute for Healthcare Improvement | Netherlands
• Dr. Jeffrey L. Sturchio | President & CEO, Rabin Martin | USA – MODERATOR
• Dr. Bach Tran | Lecturer in Health Economics at Hanoi Medical University | Vietnam
During the roundtable, participants shared their experiences and knowledge related to efforts around the world that have
enhanced consumer involvement in health systems and, in turn, led to better health outcomes. Participants later reviewed
and provided feedback on this report. The recommendations from the roundtable include the following:
BREAK DOWN SILOS AMONG CONSUMER GROUPS
FOSTER OPEN INSTITUTIONAL AND POLICY DECISION-MAKING
DESIGN AND DELIVER CARE COLLABORATIVELY
ELEVATE THE PATIENT EXPERIENCE IN MEASURING HEALTH OUTCOMES
HARNESS DIGITAL NETWORKS
EMPOWER CONSUMERS AND PATIENTS WITH DATA
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 4
This report highlights examples that participants cited during the roundtable discussion and that Rabin
Martin corroborated through follow-up research. The report also identifies opportunities for continued
investigation about how institutions in the US can apply elements of these examples to augment consumer
engagement efforts and to help broaden the US health system view of health beyond clinical outcomes.
Ultimately, it proposes ideas for further research and initiatives in this area. Recommendations include:
1
Establish an “Engaging Consumers across Health Systems” working group to share
best practices from around the world
2
Enhance the utility of feedback from consumer review online portals for hospital and
clinical settings
3
Develop learning resources (e.g., training modules, toolkits, learning exchanges) to
help health institutions work with consumer groups when delivering care
4
Invest in cultivating patient-centered attitudes among future health leaders
5
Host a series of multi-national workshops to share lessons about designing,
implementing and standardizing patient reported outcomes measures (PROMS) across
health systems
6
Make health reporting data platforms more actionable by linking them with community
health services
The magnitude and complexity of the health issues that the United States faces are vast – but so is the potential
for the consumer perspective to improve health outcomes. Unleashing the power of the consumer voice at all levels
can help health institutions in the US to adopt more holistic, collaborative and effective solutions to build a culture
of health.
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 5
KEY THEMES
How to integrate the consumer perspective across health systems
BREAK DOWN SILOS AMONG CONSUMER GROUPS
The patient and consumer voice can be stronger
when unified on cross-cutting issues
Unleashing the full power of the consumer voice requires
unification. Fragmented and specialized advocacy groups can
compete for resources and make it difficult to have significant
influence or maintain bargaining power. One participant
noted, “There seems to be a sense that, while diseasespecific advocacy groups may be very, very good, there is an
opportunity to actually create a more coordinated approach,
perhaps at a national level or a regional level.”
In the UK, the mantra, “no decision about me, without me,” has
been a unifying banner for consumer efforts to help steer the
NHS’s 20-year road map to improve the country’s health, based
on the 2002 Wanless Report (see Spotlight On: The Wanless
Report). This phrase demands that patients be involved in
decisions about their care and treatment and appears in patient
and consumer advocacy group manifestos around the world.
HIV/AIDS advocacy groups in the 1990’s used the phrase while
working to integrate the GIPA Principle (greater involvement
of people living with HIV/AIDS) into the Joint United Nations
Programme on HIV/AIDS’s ongoing response to the epidemic.4
In the UK, groups including the National Kidney Federation,
the Cure Parkinson’s Trust and the National AIDS Trust have
each invoked the mantra throughout their interactions with the
NHS. The force of this collective message has driven a cultural
shift in how decision-makers view the role of consumers within
the health system. “No decision about me, without me” – a
variation on “nothing about us, without us” – is now embedded
in the NHS Constitution and the government states that its first
guiding principle is, “patients will be at the heart of everything
we do.”5
In the Netherlands, the National Patient and Consumer
Federation (NPCF), a national consumer advocacy group,
serves as an umbrella organization to hundreds of smaller
patient groups that represent three million people in total.
The NPCF formed in 1992 because “it was important for
patients groups to work together in order to have a stronger
voice and become a significant national player.”8 The group
uses a layered configuration that allows consumer groups
to collaborate on cross-cutting issues, such as patient rights
and access to care, at the national level while coordinating
disease-specific approaches at the same time. It has often
partnered with the Dutch government over the years on a
range of patient group initiatives, including co-developing and
implementing a coordinated education program to enhance
consumer groups’ expertise and capacity to engage at the
policy level.7 As Hester M. Van de Bovenkamp and Margo J.
Trappenburg explain in their 2011 Health Care Analysis article
on Dutch patient groups’ relationships with the government,
“participants need to be able to look beyond their individual
experiences, have strong negotiating skills and organizational,
financial, medical and scientific knowledge to be able to talk to
the other actors at the negotiating table.” With funding from the
Dutch government, the NCPF continues to be a key source of
this capacity-building.9
SPOTLIGHT ON: THE WANLESS REPORT (2002)6
In the UK, consumer groups came together in the early 2000s to make their perspectives heard in an NHS-commissioned
effort to identify a 20-year roadmap to improve the country’s health. Around that time, the NHS commissioned a
former banker, Derek Wanless, to conduct an assessment of the NHS’s long-term resource requirements. The 2002
Wanless Report drew on the expertise of 28 patient advocacy groups (among representatives from other sectors) and
recommended that the NHS should move to ensure that all patients were “fully engaged” in managing their health to
cope with rising demand and costs.7 As a result, the government called for integrating shared decision-making across
NHS practices.7
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 6
FOSTER OPEN INSTITUTIONAL AND POLICY DECISION-MAKING
Consumers are able to contribute most
meaningfully at the institutional level when
they are welcomed by genuinely collaborative
environments
The attitudes and actions of an institution’s leadership –
whether within a governmental body or a hospital steering
committee – toward consumer representatives in decisionmaking processes play a substantial role in whether
consumer representatives are able to be heard. As one
participant recounted of time spent in England, “I’ve sat in
clinical government committees where there is a patient
member whose voice in that scenario was very welcome…
but I found other committees where the patient is a member
who doesn’t really have any input because the structure did
not allow him to provide it – nobody actually had interest
in true patient engagement.” While changing institutional
leaders’ often deep-seated skepticism about the value that
consumers and patients bring to decision-making is difficult,
mobilizing consumers to elect open and inclusive leadership
and improving medical professional competency frameworks
for ongoing development (including curricula) are two
effective strategies to move the needle.
At the policy level, consumers can foster an open,
collaborative environment with their votes. The German
public did this successfully in the early 2000s when it
elected a new government that would address the lack
of patient representation at the decision-making level of
Germany’s national health system. One participant familiar
SPOTLIGHT ON: “WAS HAB’ICH?”
(WASHABICH.DE)13
Medical student Anja Bittner created the website “Was
Hab’Ich?” (in English, “What do I have?”) after a friend’s
mother asked her for help in understanding her
cancer diagnosis. Free of charge, patients can upload
instructions they receive from a health professional that
they find complicated or confusing through the “Was
Hab‘Ich?” site and medical students translate them
into language that is easier to understand. The site
helps improve young doctors’ patient communication
skills and patients’ understanding of their diagnoses
simultaneously. The site has been very successful:
over two-thirds of patients give feedback, 90% of
which is positive. One-third of patients give a voluntary
donation (the site’s primary revenue source).
with the transition explained, “Our new health minister just
said we need to do something about making decisions more
transparent.” The new government restructured the country’s
highest level of health decision-making, the Federal Joint
Committee, to include patient representatives in equal number
as those from provider and payer groups. “Now, patients are
involved with everything,” the participant continued. Involving
patient representatives in the Federal Joint Committee has
contributed to enhancing the transparency of healthcare
decision-making at the national level and has enhanced
capacity of patient/consumer organizations to understand
and participate in the decision-making process.10,11 The
body’s decisions affect the 70 million members in Germany’s
statutory health insurance system.
It is also important to instill the value of the patient perspective
in existing health accreditation frameworks, which can
influence providers across the experience spectrum and
future health care providers who might lead open and
collaborative institutions one day. Participants stressed that
the key to strengthening the consumer role in decision-making
positions lies in improving patient-provider relationships. For
example, UK doctors Trish Greenhalgh and colleagues have
launched a campaign for “Real Evidence-based Medicine”
– a call to reform “Evidence-based Medicine,” which has
become standard practice for doctors in the last 20 years,
to account for individual patient needs and circumstances,
among other changes. While Greenhalgh’s movement is
young, she and her colleagues note that a number of efforts
are already in line with their campaign, such as the BMJ’s Too
Much Medicine initiative.12 As their movement grows, “Real
Evidence-based Medicine” may one day help providers
value patient input more at a systems-level.
Other experiences also can enrich the patient-provider
relationship: the German website “Was Hab’Ich?”13 (see
Spotlight On: “Was Hab’ich?”) uses young medical students as
change agents to make the current health system friendlier to
consumers’ health literacy needs. In the UK, the NHS recently
launched the Better Training, Better Care Initiative to improve
training for young medical staff and ensure better care and
outcomes for patients. The program has piloted over 20
physician training initiatives in locations around England. For
example, one pilot program sought to reduce patient waiting
times in the ER. An evaluative survey of nursing, medical, and
clinical training staff involved revealed an improvement of
quality of care, patient experience, and patient safety. The
final outcomes report on all pilots will be released in early
2015.14,15
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 7
DESIGN AND DELIVER CARE COLLABORATIVELY
Consumer groups can work with health care
providers to build a bridge between health
systems and the places where consumers live,
work, learn and play
A person’s environment and experiences have a substantial
influence on his or her health. In the United States, health has
traditionally been viewed as happening primarily in a doctor’s
office. Shifting the health system to focus more on health at
the community and population level will require a collaborative
effort among health administrators, policymakers, communitybased organizations and consumers. Consumer involvement,
in particular, is critical to helping health interventions and
preventive health services translate effectively from theory to
implementation on the ground.
formal health care system or those that are afraid of authority
structures, such as people living with HIV, intravenous drug
users or sex workers. One participant explained, “among
hidden groups it’s very difficult for the formal sector to approach
them, so we use consumer groups to spread our message.”
In Vietnam, the government collaborated with the WHO,
community committees and community health workers to roll
out a peer-to-peer educational effort to increase adherence to
and effectiveness of antiretroviral therapy among people living
with HIV. The project resulted in an 80% adherence rate among
affected populations.19
Additionally, the Avahan AIDS Initiative in India has improved
uptake of preventive health services and spurred positive
health behaviors in Southern India by incorporating community
members into its program planning and management. The
organization recruited community members to join its planning
One approach to bringing consumers and leaders of health
frompicture-based
its existingTTO
peer
networks
of female
sex is a
2. Figurecommittees
2 : The redesigned
discharge
pro forma.
This example
institutions together is co-creation (or co-production) – the idea
workers
(FSWs). The
the diclofan
FSWs 50mg
helped
design
prescription
for paracetamol
1g tdsservices
for 14 daysthat
in total,
bd for
7 days, and
that patients’ needs are better met when patients are involved
included
legal
empowerment workshops for sex workers
augmentin
625mg tds
for 5 days.
in an equal and reciprocal relationship with professionals. The
three most important elements of a successful co-creation
approach are 1) designing health institutions to encourage
consumer involvement in their own care and self-management
of their conditions; 2) helping consumers develop skills and
confidence to participate in health intervention design and
implementation; and 3) helping clinicians to support and
motivate patients effectively.8 In the UK, the Health Foundation
has invested nearly $8 million in the community-based CoCreating Health Programme (see Spotlight On: Co-Creating
Health Programme) to test how co-creation might fit into NHS
service delivery.16
Co-production for symbols-based adherence tool | Pakistan
Peer-to-peer consumer networks can be invaluable for
reaching and educating populations that lack access to the
SPOTLIGHT ON: CO-CREATING HEALTH
PROGRAMME16, 17, 18
The Co-Creating Health Programme started with eight
pilot sites, working to test co-creation models that
focused on various chronic disease states. The pilots
delivered three training and information programs
to support confidence and skill-building in people
with chronic conditions; developing motivational and
support skills; and changing health systems and ensure
sustainability beyond the life of the program. So far, the
pilots have reduced anxiety and depression, improved
clinical outcomes in diabetes control, and decreased the
number of specialist appointments among participants.
Clayton M, Syed F, Rashid A, Fayyaz U. Improving illiterate patients understanding
and adherence to discharge medications. BMJ Qual Improv Report 2012
and sensitization sessions for local leaders, youth organizations.
These community-driven program additions were shown to be
highly cost-effective when combined with basic HIV prevention
services.20 In Pakistan, doctors worked with patients to coproduce culturally competent medication adherence tools
after realizing that lack of health literacy among patients was
a pervasive challenge to treatment. They consulted with
patient groups to understand what would be more helpful and
consequently changed written dosing instructions into drawings
that depicted time of day at which the medications should be
taken. The patient groups then validated the tools and confirmed
that they were easy to understand. Patient understanding of
instructions increased three-fold among illiterate patients who
used the tools. This picture-based method is now also used in
Canada and Mali.21
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 8
ELEVATE THE PATIENT EXPERIENCE IN MEASURING HEALTH OUTCOMES
Health systems must be designed to value
both clinical outcomes and positive consumer
experiences
Quality care and consumer experience are linked inextricably.
As one participant noted, “If somebody has great clinical care,
but is so traumatized by their experience in the hospital, they
will never go back on principle.” The US has begun to test
patient-reported experience measures (PREMS) and patientreported outcomes measures (PROMS) to better assess health
care outcomes. A PREMS measure – Hospital Assessment of
Healthcare Providers and Systems (HCAHPS) survey – is now
linked to a provider’s or an institution’s reimbursement from
the Center for Medicaid Services.22 Additionally, the National
Institutes of Health (NIH) has long invested in patient outcomes
measurement tools through PROMIS (Patient Reported
Outcomes Measurement Information System).23
However, there is a long way to go before these early efforts
result in consistent national use of such tools. One challenge
to incorporating patient outcomes and experience measures
into care is ensuring that they coexist symbiotically with clinical
guidelines and regulations. Addressing that balance is not yet
a perfect science, as what patients want is not always what
is best for them. For instance, providers may feel pressured
to sacrifice medical best practice for a higher HCAHPs score
(such as when a patient requests antibiotics when they are not
medically necessary).
At the EU level, Swedenbased Health Consumer
Powerhouse has evaluated,
monitored and compared
healthcare systems among
35 countries since 2007
through indexed reports
such as the Euro Health
Consumer Index (EHCI).
Based on metrics such
as degree of patient
involvement
in patientprovider decision-making,
the
indices
provide
Euro Health Consumer Index Report
guidance to consumers,
2014 Sweden
governments and health
Health Consumer Powerhouse
system leaders about how
to improve performance
and strengthen consumer involvement in decision-making
processes. The European Commission regards the EHCI to be
the most informative and influential assessment on European
health care, and many countries provide national comment
on the results.25 For example, Serbia, rated last in the EHCI,
invited HCP to offer recommendations on how to improve its
nation’s health care.26
Across the Atlantic, the UK has made the tricky transition. In
2009, the UK’s NHS became “the first health care system
in the world to measure what it produces in terms of health,
rather than in terms of the production of health care”24 when
it mandated PROMS (patient-reported outcomes measures)
nationally for reporting outcomes after surgical treatment.
Consumer groups such as the Commission for Patient and
Public Involvement, healthtalkonline and the Picker Institute
worked collaboratively with the NHS to develop these metrics.
The NHS’s PROMs go a step further than the US’s HCAHPS
in that the former focuses on how a patient perceives an
outcome of care, rather than the latter’s concentration on a
patient’s experience of receiving care. For example, where
HCAHPS asks, “During this hospital stay, how often did the
hospital staff do everything they could to help you with your
pain?” PROMs request that a patient describe his or her pain
on a scale from “I have no pain or discomfort, moderate
pain or discomfort, or extreme pain or discomfort.” The UK
is developing an Outcomes and Experience Questionnaire
(OEQ), which combines both PREMs and PROMs into a
short survey.
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 9
HARNESS DIGITAL NETWORKS
Consumers and patients can use social media
as a tool to communicate concerns to health
systems leadership
Social media has revolutionized how people around the world
coalesce around issues. Private, consumer-driven review sites
like healthgrades, RateMD and Vitals, that allow patients to
review their experiences with specific providers, are gaining
popularity rapidly in the US (see Figure 1).27 Regarding patient
feedback portals, one roundtable participant noted, “Openness
is critical not only for consumers and their families but also
for providers, payers, and others….technology is an important
enabler of this transfer.”
FIGURE 1. Cumulative number of ratings and rated
physicians27 (based on data from RateMDs.com)
400
# Ratings (thousands)
350
300
250
200
150
100
50
0
2005
2006
2007
Physicians
2008
2009
2010
Ratings
Gao G, McCullough J, Agarwal R, Jha A. A changing landscape of physician quality reporting: Analysis of patients’ online ratings of their physicians over a 5-year
period. Journal of Medical Internet Research. 2012
However, providers and health care administrators are
understandably wary of the information that these sites collect.
The number of voices coupled with the lack of accountability for
content posted on these sites dilutes the utility and credibility
of the sites among providers. Moreover, providers worry
that negative reviews will hurt their reputation. Moderating
and funneling consumer voices into more cohesive, verified
feedback could make this type of input invaluable to patient
and consumer advocacy groups, providers and hospital or clinic
administrators alike.
iWantGreatCare, the UK’s largest aggregator of patient reviews,
has bridged the divide between consumer feedback and
provider utility. The site analyzes patient reviews from all hospitals
and clinics in the NHS and delivers quantitative and qualitative
feedback in real-time to all institutions involved in a format they
can use and trust. These include flags on unmet quality indicators
and an analysis of what patients perceive to be the institution’s
strengths and weaknesses. As one English hospital executive
explained, “We had tried many methods to capture patient
experience, but none had given the real-time detail and volume
iWantGreatCare | United Kingdom | IWantGreatCare.com
of feedback necessary to drive improved performance [that
iWantGreatCare provided].”28
The site has been so successful that it recently partnered
with the NHS to roll out patient feedback initiatives across the
country, such as the Family and Friends Test, which produces
a publicly-available cumulative score on patient satisfaction for
every NHS health institution. The test creates incentive for NHS
providers to listen to and act on the feedback they receive
from iWantGreatCare, which can help them work toward a
higher publicly-reported score. iWantGreatCare’s private sector
approach to creating a consumer- and provider-friendly portal,
coupled with the NHS’s access to networks of hospitals, allows
it to merge consumer reviews with clinically relevant data across
the health system.
In India, women typically rely on word of mouth to determine
where to seek maternal health care; however, the word of mouth
recommendation can be incomplete and unrelated to care
quality.29 To combat this issue, Merck for Mothers has partnered
with the White Ribbon Alliance for Safe Motherhood India and
Gram Vaani (an Indian social technology company) to create and
conduct a pilot of a patient review service for maternal health, a
free mobile phone platform that uses interactive voice response
technology to reach low-income women with limited literacy. This
platform helps to educate women on the quality of care they
should expect, informs them about available health programs
and services, and empowers them to make more informed health
decisions. Quality ratings and feedback can also encourage
providers and health officials to improve care.
Early findings indicate that women were able to use the platform
to learn more about maternal health, were able to rate care
quality, and the majority of women felt the service would inform
where they seek care in the future. Health providers and local
government officials were receptive to receiving women’s
feedback to improve care. Building on the field test’s success,
Merck for Mothers hopes to develop a scalable model that
encourages women to seek care in higher quality facilities and
holds providers more accountable for offering quality care.30
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 10
EMPOWER CONSUMERS AND PATIENTS WITH DATA
Delivering data in a format that consumers
can understand, embrace and use is crucial to
navigating issues of consent, confidentiality,
and privacy
One of the most exciting and talked about trends in health
technology is the potential power of “big data.” Data collection
is now ubiquitous, captured by electronic health records,
smart phones, apps, Fitbits, the Apple Watch and more. As one
participant put it, “[Patients] are the ones who are going to own
the small print data, you have to involve the patient, they have
to be engaged.” However, from the consumer perspective,
making data useable is still a challenge.
towards achieving better health outcomes. For example,
consumer representatives have helped the UK’s 100,000
Genomes Project – a plan to test the genomes of 100,000
patients and integrate the resulting data into medical care to
improve screening and treatment for cancer, infection and
rare diseases33 – understand how to best engage patients
and consumers more broadly when the initiative launches. To
understand and address the British public’s questions over
patients’ rights, privacy and consent standards, Genomics
England pursued a series of engagement activities with
patients, such as meetings between cancer advocacy groups
and Genomics England communications leadership.34 The
project will make the UK the first country to introduce genome
sequencing into its mainstream health system.
The United Arab Emirates’
Health Authority – Abu
Dhabi (HAAD) has helped
consumers take action to
improve their own health by
providing health information
through
Weqaya,
an
easy-to-understand
web
portal. Weqaya aims to
identify consumers with
cardiovascular disease risk
factors through widespread,
free
opt-out
screening
programs for all citizens (it
has screened 94% of the
Weqaya national screening program
population) and empower
| UAE
NMC Healthcare flyer
them to take steps to
mitigate those risks. It does
the latter by pooling of all a consumer’s data into one secure,
cloud-based web portal that presents a simple snapshot of
the consumer’s health with action items for improvement. The
site also supports appointment booking, sends text message
reminders and houses other eHealth and mHealth services.31
The Weqaya program has produced impressive health
outcomes: among those using Weqaya, 79% were engaged
with care (compared with 55% in control group), 42% had
normal hemoglobin A1C ranges for diabetes (compared with
24% in control group), and 25% had healthy cholesterol levels
(compared with 5% in control group).32
Understanding consumer attitudes toward unfamiliar but
potentially life-saving types of health data, such as personal
genetic sequencing, can help consumers and health
professionals work together to apply valuable information
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 11
OPPORTUNITIES
Consumer engagement across the US health system is essential to addressing the challenges that the country faces. This report
highlights examples of how other countries have fortified the consumer movement, fostered inclusive leaders, co-designed health
interventions, elevated patient experiences in measuring quality, harnessed the power of digital networks and empowered patients
and consumers with data to achieve better health outcomes. The following opportunities based on the collective input of global
roundtable participants have the potential to elevate the consumer perspective in achieving high-quality health in the US and should
be investigated further.
1
Establish an Engaging Consumers across
Health Systems Working Group to share best
practices from around the world
To capitalize on the recent conversation and momentum in the
field, we recommend establishing a global working group to
identify what works when integrating the consumer voice into
health systems decision-making, starting with the participants
from the Berlin roundtable. The purpose of the working group
will be to refine the ideas raised further, develop action plans
for the opportunities identified during this event, and explore
additional questions that arose during discussion, such as:
• In which of the findings categories are the gaps in
understanding greatest?
• How can we share lessons about incorporating the
consumer perspective into health systems across
borders more efficiently?
• How do we scale up successful models for consumer
involvement from one setting to another?
• How can we recruit individuals from our respective sectors
as champions for these ideas?
As a next step, we propose identifying highest-priority findings
and opportunities as a group and, based on that foundation,
hosting a digital meeting (due to the group’s geographic
diversity) to discuss next steps. From this point, the group
can identify activities to help disseminate the findings from
the roundtable across borders, such as compiling best
practice case studies, analyzing country experiences in
greater detail and conducting and publishing systematic
reviews of the evidence base for key recommendations.
2
Enhance the utility of feedback from consumer
review online portals for hospital and clinical
settings
US consumers and patients are increasingly turning to private,
consumer-facing sites like healthgrades, RateMDs, and Vitals
to decide where to get care and rate experiences with specific
providers and health institutions. The UK’s iWantGreatCare
demonstrates that crowd-sourced patient reviews can be
powerful feedback mechanisms for health systems when
they are filtered and processed appropriately. However, in
the US, there is a large gap between consumers submitting
these reviews and providers and health systems using that
information to improve their practices.
Adding features to patient review websites in the US such as
easily digestible data presentation for hospitals and clinics,
real-time reporting on potential quality flags, and comment
verification for patient reviews can make review data more
credible and useful for clinical practices. Furthermore, there may
be opportunities to join the large patient base and accessible
interfaces of popular consumer-friendly sites like RateMDs with
the data that providers trust such as that in Medicare’s Hospital
Compare website, which is based on results from the Hospital
Consumer Assessment of Healthcare Providers and Systems.35
3
Develop learning resources (e.g., trainings,
toolkits, learning exchanges) to help health
institutions work with consumer groups when
delivering care
Creating resources based on other institutions’ experiences
and proven results for hospitals and clinics can help institutions
work better with consumers to co-produce health interventions
that target not only clinical practice, but also local social
determinants of health. Training and toolkits may include
sample discussion guides and roles and responsibilities
frameworks to guide collaboration between the institution and
the consumer group(s). Learning exchanges build networks
between institutions and groups working on similar consumer
engagement challenges from different angles, helping all to
view the issue at hand from a new, and potentially revelatory,
perspective.
The UK’s site-specific Co-Creating Health Programme
provides a useful example: Co-Creating Health improved
health outcomes for chronic obstructive pulmonary disease,
depression, diabetes and musculoskeletal pain through
a collaborative team of local consumers, clinicians and
managers.36 Many of the resources that made this intervention
successful are available on its “Person-centred Care
Resource Centre” (http://personcentredcare.health.org.uk/)
website. In the US, linking health delivery care teams with
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 12
local community organizations (e.g., YMCA, AARP) can also
help to normalize use of community resources and other
health pathways as tools in interventions. Involving patients
and consumers directly in developing health interventions
can mitigate disparities, create more culturally sensitive or
alternative pathways for care and improve health outcomes.
4
Invest in cultivating patient-centered attitudes
among future health leaders
In response to the Affordable Care Act’s greater emphasis on
and incentives for population health over clinical procedures,
US medical schools are beginning to invest in programs that
emphasize public health and bedside manner training.37 These
schools can supplement some of their efforts with innovations
in patient-provider communication and medical training tools
from abroad. For instance, administrators at these schools
– such as the University of Arizona College of Medicine38 –
could form a network with Trish Greenhalg’s team and medical
schools internationally implementing “Real Evidence-Based
Medicine” to learn from each other’s successes and challenges.
Additionally, launching a website in the US based on the
German portal “Was Hab’Ich?” could help American medical
students improve their patient communications skills and
learn from real-life patient cases simultaneously. Efforts like
these position young providers to be more open to listening
to the consumer perspective in a variety of contexts, from the
examination room to the board room, as they ascend the ranks
of health institutions.
5
Host a series of multi-national workshops to
share lessons about designing, implementing
and standardizing patient reported outcomes
measures (PROMs) across health systems
Individuals working to scale up PROMs in the US, such as
those at the National Quality Forum, could participate in a
series of workshops with health leaders from other countries
who have already achieved scale in their home countries, such
as those from the NHS, to share experiences, challenges and
subsequent strategies to achieve better quality health care by
using patient-reported outcomes. The US has piloted a number
of PROMS efforts, especially through the NIH’s PROMIS
(Patient Reported Outcomes Measurement Information
System) initiative, but has not yet made the leap to establishing
systems-wide PROMS standards. Countries outside the US that
have successfully integrated PROMS into their health systems
quality metrics can teach US institutions how to do the same.
6
Make health reporting data platforms more
actionable by linking them with community
health services
The US can use increasingly popular health tracker
platforms, such as those developed for Fitbits, Jawbones
and Apple Watches, to connect consumers with local health
resources. While US programs like Project HealthDesign
have investigated the potential for observations of daily
living (ODLs) – sleeping schedule, eating patterns, mood,
etc. – to inform clinical encounters, they can also be used
to encourage users of ODL-compatible platforms to connect
with community health resources, such as community fitness
centers, support groups and social prescribing organizations
like Health Leads.39 For instance, the devices that collect ODLs
could push these suggested resources to their users when the
they detect “triggers” related to health issues in the ODL data
(e.g., for asthma, hypertension, or heart failure). This would help
patients take control of their own care between appointments.
A model that has already succeeded in this regard outside the
US is the United Arab Emirates’ Weqaya platform, which helps
consumers understand their screening data and connect not
only with clinical resources, but also with non-traditional health
interventions like wellness centers.40
Countries around the world face similar health challenges, such
as an increasing chronic disease burden, aging populations
and fragmented health systems. Common challenges create
the opportunity to share solutions. This report outlines ways
in which integrating the consumer perspective into health
decision-making at all levels has strengthened health systems
and improved health outcomes in a range of settings, and how
it may have similar effects in the US. Continued exploration
of the ideas generated during the Berlin Roundtable in
October 2014 will promote valuable knowledge-sharing about
consumer engagement best practices across borders and
help the US make strides toward building a culture of health
at home.
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 13
REFERENCES
1
Piot P. No time to lose: a life in pursuit of deadly viruses. New York, NY: W.W. Norton and Company, Inc. 2012
Laurance, J, et al. Patient engagement: four case studies that highlight the potential for improved health outcomes and reduced costs. Health
Affairs. 2014; 33.9: 1627-34
2
Carman K, Dardess P, Maurer M, et al. Patient and family engagement: A framework for understanding the elements and developing interventions
and policies. Health Affairs. 2013; 32(2): 223-231
3
Right to Health, Right to Life: Why we need to act now on HIV and human rights. High level meeting on HIV and human rights in the European
Union and neighbouring countries. Joint United Nations Programme (UNAIDS). http://ec.europa.eu/health/sti_prevention/docs/ev_20130527_discussion_paper_en.pdf Published May 2013. Accessed November 25, 2014
4
Equity and Excellence: Liberating the NHS. National Health Service. https://www.gov.uk/government/uploads/system/uploads/attachment_data/
file/213823/dh_117794.pdf Published 2010. Accessed November 19, 2014
5
Wanless D. Securing our future health: Taking a long-term view, final report. April 2002. The Public Enquiry Unit, UK. http://si.easp.es/derechosciudadania/wp-content/uploads/2009/10/4.Informe-Wanless.pdf Published April 2002. Accessed November 19, 2014
6
Background briefing: No Decision about me without me. The Health Foundation and Patient Voices. http://www.health.org.uk/public/
cms/75/76/5620/4282/Background_briefing%20No%20decision%20about%20me%20without%20me.pdf?realName=wETEYR.pdf Published
October 5, 2011. Accessed November 19, 2014
7
Patiëntenfederatie NPCF; Who we are and what we do. Nederlandse Patienten Consumenten Federatie website. http://www.npcf.nl/index.
php?option=com_content&view=article&id=4164&Itemid=31. Updated April 2014. Accessed November 25, 2014
8
9
Bovenkamp H, Trappenburg M. Government influence on patient organizations. Health Care Anal. 2011; 19:329–351 doi: 10.1007/s10728-010-0155-
7
Weiterentwicklung der Patientenbeteiligung im deutschen Gesundheitswesen. Deutscher Behindertenrat. http://www.vzbv.de/mediapics/weiterentwicklung_patientenbeteiligung_06_2008.pdf Published 2008. Accessed November 19, 2014
10
Conklin A, Slote Morris Z, Nolte E. Involving the public in healthcare policy: An update of the research evidence and proposed evaluation framework. RAND Europe. 2010.
11
12
Greenhalgh T, Maskrey, N. “Evidence-based Medicine: A Movement in Crisis?” BMJ 2014;348:g3725
13
Ashoka innovators for the public. https://www.ashoka.org/fellow/anja-bittner Accessed November 19, 2014
Better Training Better Care infographic. 2012. NHS Health Education England. http://hee.nhs.uk/wp-content/blogs.dir/321/files/2012/09/Final-version-HHE-BTBC-Infographic-v9JPG.jpg Accessed November 19, 2014
14
Better training, better care. NHS Health Education England. 2014; 5:14. http://hee.nhs.uk/wp-content/blogs.dir/321/files/2012/09/BTBC-NewsMarch-April-V19-Final.pdf Accessed November 19, 2014
15
Co-creating health. The Health Foundation. http://www.health.org.uk/areas-of-work/programmes/co-creating-health/ Accessed November 25,
2014
16
Kosmala-Anderson J, Wallace M, Turner A, Bourne C. Self-reported effects of attending the Health Foundation’s Co-Creating Health Self-management programme for patients with type 2 diabetes mellitus in London, England. Arch Med Sci 2014; 10, 4: 773–781 doi: 10.5114/aoms.2014.44869
17
Turner A, Anderson J, Wallace L, Bourne C. An evaluation of a self-management program for patients with long-term conditions. Patient Educ
Couns 2014; 10, doi:10.1016/j.pec.2014.08.022
18
Optimising HIV treatment access and retention in care: Linking community level interventions with healthcare delivery systems. Pangaea Global
AIDS Foundation, WHO, UNAIDS. Published September 18-20, 2012
19
Vassall A, Chandrashekar S, Pickles M. Community mobilisation and empowerment interventions as part of HIV prevention for female sex
workers in Southern India: a cost-effectiveness analysis. PLoS One. 2014; 9(10): e110562
20
Clayton M, Syed F, Rashid A, Fayyaz U. Improving illiterate patients understanding and adherence to discharge medications. BMJ Qual Improv
Report 2012; 1: doi:10.1136/bmjquality.u496.w167
21
Hospital value-based purchasing program. Department of Health and Human Services Centers for Medicare and Medicaid Services. http://www.
cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/downloads/Hospital_VBPurchasing_Fact_Sheet_ICN907664.
pdf Published 2013. Accessed November 19, 2014
22
Quality matters. The Commonwealth Fund. December 2011/January 2012 Issue. http://www.commonwealthfund.org/publications/newsletters/
quality-matters/2011/december-january-2012/q-a Accessed November 19, 2104
23
Devlin N, Appleby J, The King’s Fund: Getting the most out of PROMS: Putting health outcomes at the heart of NHS decision-making. 2010.
https://www.kingsfund.org.uk/sites/files/kf/Getting-the-most-out-of-PROMs-Nancy-Devlin-John-Appleby-Kings-Fund-March-2010.pdf Accessed
November 19, 2014
24
25
European study ranks Bulgaria at healthcare’s bottom. Novinite. http://www.novinite.com/articles/139380/European+Study+Ranks+Bulgar-
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 14
ia+at+Healthcare’s+Bottom Published 2012. Accessed November 19, 2014
EHCI Newsletter. Health Consumer Powerhouse. http://www.healthpowerhouse.com/index.php?option=com_content&view=section&layout=blog&id=1&menu=yes&archive=news&Itemid=1&limitstart=9 Published December 2013. Accessed November 19, 2014
26
Gao G, McCullough J, Agarwal R, Jha A. A changing landscape of physician quality reporting: Analysis of patients’ online ratings of their physicians over a 5-year period. Journal of Medical Internet Research. 2012; Jan-Feb 14(1): e38.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374528/
Accessed November 19, 2014
27
Case Study: Complete solution for all GP practices launched. I Want Great Care website. http://www.iwgc.org/case-studies/ Accessed November
19, 2014
28
Parmar V, Keyson D, deBont C. Persuasive technology to shape social beliefs: A case of persuasive health information systems for rural women
in India,” Comms of the Assoc for Info Sys: 2009; 24
29
Amplifying women’s voices to improve the quality of maternal health care. Merck for Mothers Partners Newsletter. Merck for Mothers. http://
www.gramvaani.org/wp-content/uploads/2013/12/MfM-Partners-Newsletter-Dec-2013.pdf Accessed November 25, 2014
30
Innovation in addressing NCDs: A case study from Abu Dhabi. Actevis Consulting Group. Health G20 Report. http://issuu.com/actevisconsulting/
docs/ncds_abudhabi Accessed November 19, 2014.
31
Sheikh R. Abu Dhabi Weqaya programme tackling NCDs: Application to low and middle income health markets. ITU workshop on “E-health
services in low-resource settings: requirements and ITU role.” Tokyo, Japan, Febrary 4-5, 2013. https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CCMQFjAB&url=http%3A%2F%2Fwww.haad.ae%2FHAAD%2FLinkClick.aspx%3Ffileticket%3DVQX0QEUfbWc%253D%26tabid%3D1174&ei=tVN1VNu7JdCJsQSA24C4Aw&usg=AFQjCNHKRBxEhIvDtwAddEuR0LTdwzxj5Q&sig2=9Fzy0V8bu9ydesHv6quuIQ&bvm=bv.80642063,d.cWc Accessed November 25, 2014
32
Genomics England calls on the UK research community. Genomics England. http://www.genomicsengland.co.uk/gecip-domains-eoi-call/ Updated November 12, 2014. Accessed November 25, 2014
33
Notes of the meeting on 24th March, 2014 between patient advocates and Professor Michael Parker and Ms. Vivienne Parry of Genomics
England, held at the Angel Building, Islington. Independent Cancer Patient’s Voice. http://independentcancerpatientsvoice.org.uk/app/download/5803451718/Notes+from+meeting+with+Genomics+England+on+24+03.pdf. Updated March 24, 2014. Accessed November 25, 2014
34
Hospital quality initiative overview. Centers for Medicaid and Medicare Services. https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/HospitalQualityInits/downloads/HospitalOverview.pdf Updated July 2008. Accessed November 25, 2014
35
Realpe A, Wallace L. What is co-production? The Health Foundation. 2010. http://www.health.org.uk/areas-of-work/programmes/co-creating-health/impact/ Accessed November 19, 2014
36
Landro L. The talking cure for health care. The Wall Street Journal. April 8, 2013. http://online.wsj.com/articles/SB10001424127887323628804578
346223960774296 Accessed November 25, 2014
37
Mann S. After reform, more medical schools emphasize public health. Association of American Medical Colleges. https://www.aamc.org/newsroom/reporter/170156/public_health.html Published 2011. Accessed November 25, 2014
38
HealthDesign: Rethinking the power and potential of personal health records. The Robert Wood Johnson Foundation and Project HealthDesign.
http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2014/rwjf412107 Updated April 2014. Accessed November 26, 2014
39
Harrison O and Hajat C. The Abu Dhabi cardiovascular program: The continuation of Framingham. Progress in Cardiovascular Diseases 2010;
53: 28-38.
40
Icons provided courtesy of www.flaticon.com under Creative Commons attribution license.
CONSUMER POWER TO BUILD BETTER HEALTH SYSTEMS // 15
Participants mid-discussion at the Global Perspectives on Integrating the
Consumer Voice across Health Systems Roundtable | Berlin, Germany | 19 October 2014
This report was prepared by Rabin Martin with funding from the Robert Wood Johnson
Foundation. Many thanks to Tenley Ghan, Alison Moore, Rebecca Hoppy and
Jeffrey L. Sturchio for their contributions to this report.