Choice, Risk, and Accountability [How] Can Expert Patients Help Provide Solutions for PCTs Priority Challenges? Jim Phillips & Bob Sang

Improving Effectiveness is Key INFORMED EQUITABLE ACCESS BETTER OUTCOMES IMPROVED EFFICIENCY PREVENTION PROMOTION INTERACTION RECOVERY

So, Why Bother? Section 11 Choice The Evidence …….

Confident, knowledgeable patients have fewer hospitalisations and enjoy improved health status

Benefits of self management/self care evidence from around the world Doctor visits reduced by 30 to 40% Reduction in outpatient visits by 17% Hospital length of stay reduced by 50% Angina attacks reduced by 50% Improved health risk scores for heart attacks and diabetes Improved health status, such as increased fitness, improved mobility Reduction in stress and anxiety Days off work reduced by 50% Increase in medicine compliance to 85% Lorig KR, Sobel DS, Effective Clin Practice 2001;4: ) Average cost: savings ratio = 1 : 1.5 to 10 ( Lorig KR, Sobel DS, Effective Clin Practice 2001;4: ) i.e. for every £100 spent, savings = £150 to £1000 net of risks Above figures supplied by Department of Economic and Operational Research (EOR) DoH. A a range of studies are listed in appendix slides. There is a further discussion on self management research and evidence on the Expert Patients Programme web site.

10% more take medicine as prescribed 30% of the people showed significant reduction in feeling of depression 30% showed reduction in feeling of lacking in energy felt intensity of pain, breathlessness, tiredness and depression less for 20 to 30% of the people increase in confidence levels for 30 to 50% of the people that they would not let pain, breathlessness, tiredness or depression interfere with their lives 9% fewer visits to GPs These are emerging findings from the internal audit of the Expert Patient program being carried out by the DoH and are based on the first PCTs to join the pilot at 4 month follow up a. Whilst provisional and not part of a RCT they clearly show a trend in line with the evidence base from the US and Kaiser Permanente. A full write up of these will be provided on the Expert patients web site. The key findings so far – EPP emerging trends

The key findings so far- EPP the emerging trends 6% fewer visits to A&E 9% fewer visits to outpatients 15% increase in visits to pharmacists 17% reduction in number of days off work (by 204 days) 6% increase in number of people using health information 30% increase in number of people feeling better prepared for consultations with care professionals. These are emerging findings from the internal audit of the Expert Patient program being carried out by the DoH and are based on the first PCTs to join the pilot at 4 month follow up a. Whilst provisional and not part of a RCT they clearly show a trend in line with the evidence base from the US and Kaiser Permanente. A full write up of these will be provided on the Expert patients web site.

Living with Chronic Disease 3 Key Tasks Managing the illness Taking medications Changing diet and exercise Managing symptoms of pain, fatigue, insomnia, shortness of breath, etc. Making best use of health care available Managing daily activities and roles Maintaining roles as spouse, parent, employment, etc. Managing the emotional changes Managing anger, fear, depression, anxiety, etc. From Expert Patients Program leaders manual

person and professional in partnership Be aware of the possible social/psychological/physical impact of condition Identify lifestyle and psychological barriers to managing condition Identify behaviour changes needed (diet, exercise) determine the areas in which changes are possible Identify system determinates- CHOICE develop care plan and goals based on persons ability to engage.

good listener clear communicator works in partnership resource facilitator monitors condition outward focused problem solver validates patients experience honest nurturers respect Empowering Doctor good listener clear communicator works in partnership resource finder monitors condition outward focussed problem solver maintains physical and emotional well being partner in care confident Expert Patient

80% of symptoms and care are self managed 20% care managed by health system 5% increase in self managed care 25% decrease in professional care Kemper D et al see also Williams JD, Danaher K, 1978

Improved efficiency Effectiveness HealthOutcomesHealthOutcomesAttitudesBeliefsMoodsAttitudesBeliefsMoodsHealthBehaviorChangeHealthBehaviorChange Adapted from Lorig K, Arthritis and Rheumatism. 1989;32:91-95

Everyone else – the professionals, my children and my friends – feel theyre being very open and up-front referring to me as disabled and discussing how Im going to cope not doing the things I used to. Id like people to concentrate on what I can do and explore with me (rather than for me) the possibilities for what things I can improve - not how they are going to deteriorate. Participant on expert patient course

Author and descriptionEffectiveness in health outcomes and health service utilisation Vickery et al The effect of Self-care interventions on the use of medical services within a Medicare population Doctor visits reduced 31% Lorig et al Can a back pain discussion group improve health status and lower health care costs (unpublished) Doctor visits decreased 46% Participants had improvements in pain, disability, and role function and health distress. Swindon Communication project trust (SCAMP) Project report Very high user satisfaction. Has been effective in decreasing social isolation. Lorig et al Evidence suggesting that a chronic disease self management programme can improve health status while reducing hospitalisation Improved self-confidence, social role, exercise. Reduced fatigue, health service use Montgomery et al Patient education and health promotion can be effective in Parkinsons disease: a randomised control trial. Clinical improvement 10%: days confined to home decreased 28%. Doctors visits reduced 24%, hospitalisation decreased by 50% Fries et al Randomised control trial of cost reductions from a health education programme Improved health risk scorers. Improved medical care utilisation. Levin R A randomised control trial comparing a Cognitive behavioural angina management programme with a education session Reduced anxiety depression. Reduced frequency of angina attacks and use of glyceryl trinitrate. Positive changes to diet and exercise Background – supporting evidence see in particular the work of Lorig K, Fries J and Barlow J

Author and descriptionEffectiveness in health outcomes and health service utilisation Fries J et al Patient education in arthritis: Randomised controlled trial of a mail delivered programme. Decrease in pain, improvement in function, increased self efficacy and exercise. Days of work or confined to home reduced 52%. improvements last up to one year E Grossel T Cronan Cost analysis of self management program for people with chronic illness Improved heath status and self-efficacy. Most effective was a combination of education and support group. This fits in well with the proposal to develop Self-care networks Leigh P Randomised controlled study of a retiree health promotion program 7% decrease in physician visits. 50% participation in programme and 85% retention of participants. Improved health status and behaviours Fries J Health risk changes with a low cost individualised health promotion program: effects up to 30 months Progressive health improvements particularly around changes over time in diet and exercise, improvements in cholesterol levels and stress Moore j et al Effect of a Self-care book on physician visits Total medical visits reduced by 7.5% Lorig et al A work place health education programme that reduces outpatient visits. Overall reduction of 7.2% in visits to outpatients. With 17% in reduction found in one group Barlow & Barefoot (1996) Increase in exercise exercised. Reduction in depression and increased self confidence

Author and descriptionEffectiveness in health outcomes and health service utilisation Barlow et al. (1998a & 1998b) Significant improvements on pain, depression, anxiety, illness acceptance, self-efficacy, cognitive symptom management & communication with physician. Changes still apparent 12 months on. Barlow et al. (1999) At 4 months: significant improvements on pain, self-efficacy, cognitive symptom management & communication with physician. Also, significant improvements on exercise and relaxation. Braden, C (1991) Whether SLE education intervention changes patterns of learned response. Participants demonstrated a significant change in learned response over time with uncertainty & depression (both decreasing) and enabling skills, self-efficacy & self-worth (all increasing) contributing to the significant change over time. Significant improvements over time in knowledge, range and number of rest, relaxation, heat & exercise activities. Cohen et al. (1986) Comparison of lay-instructed and health professional-instructed versions of the ASMP and compare outcomes against a control group. Increased knowledge & exercise. No differences in outcome measures between groups led by lay people and professionals. Lorig et al. (1986) To compare lay-taught and health professional-taught versions of the ASMP and compare outcomes against a control group. Improvements in exercise, relaxation, knowledge. Less disability. No difference whether lay or professionally led Lorig et al. (1999) To evaluate the an arthritis Self-care intervention among Spanish speaking participants. At 12 months compared with baseline: significant effects on pain, disability, general health, depression, self-efficacy, exercise. Lorig & Holman (1989) To evaluate the effects of reinforcement efforts on ASMP outcomes. significant improvements on pain (20%), depression (13%), & physician visits (35%).

Author and descriptionEffectiveness in health outcomes and health service utilisation Barlow et al. (1998a & 1998b) Significant improvements on pain, depression, anxiety, illness acceptance, self-efficacy, cognitive symptom management & communication with physician. Changes still apparent 12 months on. Barlow et al. (1999) At 4 months: significant improvements on pain, self-efficacy, cognitive symptom management & communication with physician. Also, significant improvements on exercise and relaxation. Braden, C (1991) Whether SLE education intervention changes patterns of learned response. Participants demonstrated a significant change in learned response over time with uncertainty & depression (both decreasing) and enabling skills, self-efficacy & self-worth (all increasing) contributing to the significant change over time. Significant improvements over time in knowledge, range and number of rest, relaxation, heat & exercise activities. Cohen et al. (1986) Comparison of lay-instructed and health professional-instructed versions of the ASMP and compare outcomes against a control group. Increased knowledge & exercise. No differences in outcome measures between groups led by lay people and professionals. Lorig et al. (1986) To compare lay-taught and health professional-taught versions of the ASMP and compare outcomes against a control group. Improvements in exercise, relaxation, knowledge. Less disability. No difference whether lay or professionally led Lorig et al. (1999) To evaluate the an arthritis Self-care intervention among Spanish speaking participants. At 12 months compared with baseline: significant effects on pain, disability, general health, depression, self-efficacy, exercise. Lorig & Holman (1989) To evaluate the effects of reinforcement efforts on ASMP outcomes. significant improvements on pain (20%), depression (13%), & physician visits (35%).

Author and descriptionEffectiveness in health outcomes and health service utilisation Lorig et al. (1993) To evaluate the effects of the ASMP outcomes over a 4 year period. Significantly less pain ( 19% -22%); fewer visits to physicians (42% -44%); improved self efficacy (17% -34%). Simeoni et al. (1995) To evaluate the effectiveness of a community based arthritis education programme. At 6 months compared with baseline: Group 1: significantly increased knowledge & satisfaction with physical ability. Bailey et al. (1999) community service asthma education programme with respect to improving asthma knowledge, promoting compliance with medication and morbidity reduction. Significantly increased knowledge, better compliance with medication, lower symptom severity. Boulet et al. (1995) Program for asthmatics with respect to increase in knowledge of asthma and self-management skills. Emphasis on criteria recognition for control or loss of control. Significantly higher knowledge, quality of life (symptoms & emotions); significantly lower ER visits, work absenteeism. Charlton et al. (1990) To evaluate a peak flow and a symptoms only self- management plan for controlling asthma. Significant reductions in salbutamol treatment. Significant reductions in doctor consultations, oral steroid use. Improvements were broadly consistent for both adults & children Choy et al. (1999) Pilot study to evaluate hospital based education programme with respect to self-management skills & morbidity with a group of low socioeconomic status & education level. At 12 months compared with baseline: Significant improvement on hospitalisations, family physician visits, Accident & Emergency visits, patients self-rating of their asthma control.

Author and descriptionEffectiveness in health outcomes and health service utilisation DSouza et al.(1998) To assess the effectiveness of the credit card plan 6 month community based asthma programme, 2 yrs after the end of the programme with respect to GP visits, hospital visits & admissions, & asthma morbidity. At 18 months & 30 months: Significantly fewer patients making routine GP visits, emergency visits to GP & being woken most nights by asthma during previous 12 months. Gillies et al. (1996) to determine the effect of introducing an action plan to children with mild to moderate asthma, who have never used a plan before. Second 8 weeks of plan compared with prior to plan: significant improvement for nights woken, days on steroids, days on reliever inhalers, nebuliser use, GP visits, days out of action. Parents: 90% of parents felt plan had led to overall improvement in their management of the childs asthma; 88% more confidence in managing childs asthma. Jenkinson et al. (1988) To evaluate effects on self-management of book, tape & book with tape given to patients by GP with no other intervention. Significant improvement in knowledge; reduced perceived disability (significance not reported). Kotses et al. (1996) To compare the effectiveness of personalized self- management programs based on patient recording procedures with that of an established group asthma self-management program, the Wheezers Anonymous program Significant improvement in morning peak flow. Significant improvement in morning asthma attacks. For both group and those using personalized plans

Author and descriptionEffectiveness in health outcomes and health service utilisation J.Fries et al Reducing need and demand for medical services in high risk groups Physician use decreased.8 visits in 6 months, illness duration reduced.9 days Vickery et al Effect of Self-care education programme on medical visits Total medical visits reduced 17%, visits for minor illnesses decreased 31%