We know that the ‘real work’ in chronic disease management is done by the patient themselves.

How can we improve the most important partnership in health?

This was a major focus of the IHI forum in Washington this week.

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How well do you provide Patient and Family Centred Care

The Indian Medical Service provides health care to 1.9 Native Americans.
They challenged us with this survey to assess our experience with patient and family involvement.

Are you an A, B or C?

• A. Beyond patient satisfaction surveys or focus groups, our organisation does not have a formal method for obtaining patient and family feedback.
• B. We have an active patient/family advisory panel
• C. Patient and family are members of satnding committess and makes decisions at the program an policy level.

Even more challenging, the IHI has a draft organisational self- assessment tool relating to patient and family centred care.
How many ‘Yes’s can you score?
More information from the IHI on Patient Centred Care is available here

Patients as Partners

British Columbia in Canada (BC), has been developing a ‘Patients as Partners’ program, as part of their wider primary health care agenda.

Kelly McQuillen is Director of Patient as Partners with the Ministry of Health services. Connie Davis is a senior quality improvement advisor with Impact BC, a not-for-profit organisation established to work across BC’s health system in support of system improvement and transformation. They are the co-leaders of the Patients as Partners agenda, and their team presented a Mini-Course on Patient Partnerships.

The Chronic Disease Model emphasises the important of the informed motivated patient working in partnership with an available activated primary care team.

In BC, they want to wrap the patient in a general practice, and wrap this practice in support.

Patients as Advocates

“Why do we want patients as partners?”, asked the Ministry of Health Services.

Poor experiences in health care lead to poor safety, poor outcomes, increased costs, and reduced support for the health service. Providers want to provide good experiences.

The patient voice can change the ‘soclal contract’ between the government and primary care. In a time of health care reform, they can be our strongest advocates – if we let them in on the secret. When decisions are made as to where resources should best be allocated, the patients voice is the one that has the most influence before government and opposition.

Training for Patients

When the BC government and the BC Medical Association asked General Practice how they could assist in making their primary care role better, the answer was
“Value Us, Pay Us, Train Us, Support Us”

The same applies to improving the participation of patients in primary care delivery.

They need training in understanding of the structure of general practice and the health care system, the nature of patient involvement,communication, self-mamangement and listening skills. They need support to meaningfully engage with physicians.

The Consumers Health Forum (in Canberra) would say there is a great difference between a ‘patient’ and an ‘informed consumer’.

Choosing patients, training them and supporting them in their role is a challenge for those who want to partner with patients, and is often neglected.

Just as importantly, providers need to be trained to meaningfully engage with patients. In BC, they have developed a comprehensive approach through stakeholder partnerships and leadership of the General Practice Services Committee, Practice Support Program (PSP). The PSP assists clinicians with practice redesign, including patient engagement. The BC Ministry also funds and supports Self-management education and self-management support through programs offered through the University of Victoria (the Chronic Disease Self-management Program) and the Canadian Mental Health Association (Bounce Back). These programs ensure a consistent training experience and curriculum.

Principles
The Institute of Family Centered Care outlines four Core principles for patient centered care delivery.

• Dignity and Respect
• Information Sharing
• Participation
• Collaboration

Using these principles, The Canadian program has a comprehensive approach to patient partnership. They identify three key levels where this should occur.

• Individual Health Care
• Shaping the Primary Health Care System
• Bringing in the Community

This is a challenge to many of us providing primary care, or developing programs to foster patient involvement in the health system.

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Individual Health Care

Many of us are aware of the need to foster patient self management. How many of us have systems in place to improve our patients’ ability to self manage? How many of us have measures in place to determine whether we are meeting this goal.

The BC team nominated these as possible measures for self-management support.

• Access to self-management programs
• Patients in Integrated Health Networks & Practice Support Program with action plans
• Number of health care professionals trained in self-management support
• Patient experience survery
• Patient self-management confidence survey
• Provider confidence in Self Management Support

Sample surveys are available at http://www.newhealthpartnerships.org/ & http://www.howsyourhealth.org

For the last two years, Kelly McQuillen has been the director of the Patients as Partners, Primary Health Care, Ministry of Health Services. In this capacity, she has worked with other stakeholders to expand access to self management services such as the Univeristy of Victoria’s “Living a Healthy Life with Chronic Disease”

This is a peer led program, in which leaders (who also have a chronic disease) first attend a four day training workshop.

In the group classes, the leaders work through a scripted leaders manual. Group size is about 10, and meet weekly for 2 and a half hours each week over 6 week. There is a “Living a Healthy Life with Chronic Conditions” workbook for each participant.

The skills taught include Problem solving, Decision making, Resource utilization, Patient-provider relationships and Taking action.

At 6 months there was demonstrated improvements in exercise, communication, self-reported health, disability and social activity.

The two year results in implementation of this Stanford model of CDSMP are encouraging, with a decrease in emergency room visits and health distress and improvement in self-efficacy.

Lorig, K., Ritter, P., Stewart, A., Sobel, D., Brown, B., Bandura, A., Gonzalez, V., Laurent, D. & Holman, H. (2001). Chronic Disease Self-
Management Program: Two year health status and health care utilization outcomes. Medical Care, 39(11), 1217 – 1223.

Training for clinicans

Dr. Shirley Sze is a physician champion in the practice support program and is committed to the ‘Patients as Partners’ agenda. Through the Practice Support Program of the GPSC, physicians like Shirley have assisted to develop and deliver comprehensive training program for clinicans in Patient Self Management Support.

This includes aspects of focusing on the patients agenda, motivational interviewing, behaviour change and dealing with ambivalence. A collaborative approach to support productive interactions through self-management was implemented.

The modules of the Practice Support Program are described in detail here

A number of other resources including instructive videos are available on the practice support section of the impactbc website

Health Literacy

Connie Davis and the PHC partners have been working on a Health Literacy Prototype Collaborative in Communities.

The collaborative teams included adult literacy teachers, physicians, quality improvement advisors from the Health Authorities and patients.

The key themes that emerged were Relationships (values, preferences, respect), Creating Understanding (plain speech, follow up, technology, easy wayfinding) and Partnering with the Community (peers, education, resources)

A key strategy that improved understanding was when clinicians used a Teachback Technique to ‘close the loop’.
eg “Can you say that back to me so I know that what I said was clear”.

Walking through your system from time of making an appointment to leaving the practice, and arranging the follow up, was also a useful tool.

Measures used included a patient survey asking

• “My doctor asked about my ideas, my beliefs, and what I wanted when we planned my care.”
• “My doctor explained things to me in a way that was easy to understand.”
• “I felt comfortable asking questions.”
• “It was easy for me to tell the doctor when there was something I did not understand.”

Practices in the collaborative that had improvements in these scores also had significant improvements in clinical outcomes.

Shaping the Primary Health System

Do you have a goal of including the patient’s voice in the way you deliver primary care in your practice? In what ways do you do this? Can you measure how well you include patients in the design?

This is an area where most practices / system find that little pre-work has been done. There is concern that patients will ‘see our dirty laundry’ – when in fact that is what they see every day.

The aim is to
• Include voice, choice and representation in transformation efforts
• Create a habit of patient and family involvement from policy to practice level
• Train and support patients and providers towards meaningful engagement

In a group setting, patients are the ones that don’t allow other patients to make unrealistic suggestions.

One activity that proved very useful in BC was mapping the Patient Journey.

Eugene Pascuzzo was a farmer who presented at the conference. All providers in the system and patients with diabetes got together for a day to process map the ‘patient journey’ – what was required in all his contacts with the health system. There was enormous advantage in having everyone together – pathology, allied health, specialists, GPs. All were surprised at the complicated path required. Very significant improvements were made in the design of the services to enable the patient to undertake the journey to self management.

A video of his story is available here

The patients who worked with Gene found group visits as an excellent way to improve their self management and to simplify their patient journey. Note that ‘group visits’ fizzle out unless the doctor is a participant. In Gene’s group, each patients key measures (BP, Chol, HbA1C) are displayed using a data projector for the whole group to see.

Gene says

We mapped a chronic disease from diagnosis to self management from patient’s view point… Patients felt heard and valued as equal partners and loved it, but for several providers, it was a new and unsettling experience

Having empowered patients involved is key.

The process mapping exercise is based on the work of the NHS. These resources are recommended

• NHS Institute for Innovation and Improvement, (2010)
  Process Mapping, Analysis, and redesign.

• Impact BC (Nov 26, 2009) a step by step
  presentation on mapping

• Willis, D. (2005) Making Every Minute Count Cytotec no prescription

Bringing in the Community

Do you aim to include the voice of the community in the way primary care is delivered? How will you do this? Can you measure the participation of the community in primary care efforts?

Initially, the General Practice Services Committee, responsible for improving the delivery of primary care services in BC, was reluctant to actively engage with patients. Asking might raise expectations of what can be achieved and this could require significant change beyond their scope and mandate.

In the spirit of patient centered care they stepped up to support the desired agenda of partnership with patients and public.

The GPSC Experience and the overall provincial patients as partners experience in primary healthcare has shown the benefits of having patients involved in decision making to such an extent that now each step is taken with the understanding that patients are required at the table to ensure population needs are considered..

Patients have been instrumental in developing developing the patients as partners agenda and have a strong desire to continue to have a voice around provincial programs – they aim to act as a strong voice for general practice.

How well do we achieve patient and public involvement in health
care specifically and in their communities in general. Do we continuously include patient/family and public voice, choice
and representation?

As Sue Davis, Vancouver Coastal Health Authority, says – do you get legitmate engagement from the ‘get-go’?

In BC, there were three programs in particular that were profiled where they have worked to bring the community together to improve health outcomes.

The Vascular Improvement Program brings together patients, community service groups, the Heart Foundation, public health providers, hospital, rehabilitation services, local councils, provincial governments, and other local groups to tackle the problem of premature vascular disease together.

Integrated Health Network

An Integrated Health Network is a formal partnership between patient, family doctor and selected health care practitioners. It is a virtual team tailored to patient’s specific needs, with the patient (and family) as key partners. It is a process used for patients with a number of chronic diseases at high risk of morbidity. The IHNs work to wrap care around the complex care patients to reduce hospitalizations, delay residential care, improve patient and provider experience and to build a sustainable model of quality primary health care.

The PatientVoices Network

The PatientVoices Network is a new program through the leadership of the Healthy Heart Society and the Ministry of Health Services that aims to create mechanisms for patients, their families and community stakeholders to participate in primary healthcare /system changes. The network supports and facilitates the Patients as Partners Primary Health Care agenda.

It provides patients with a forum to discuss health system issues, and provides specific training and guidance for patients in the network to become leaders in advocating patient-centred health reform and peer-peer coaching.

It is centred around a ‘virtual community’ of web resources that is in active development. Details can be found at www.patientvoices.ca

Improved health outcomes require an informed motivated patient working in partnership with an available activated primary care team. Often in design of our health care services the ‘patient’ side of this equation is neglected. The ‘Patients as Partners’ agenda works to ensure that both sides of this partnership are optimised.

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