How to Represent the Patient Voice in the Electronic Health Record?

There is an agreement among patients, professionals, as well as leaders, and governance that person-centered care (PCC) is central to care quality. PCC care is a sharing of power to ensure that the answer to: "What matters to you?" drives care decisions. Thus, the patient voice needs to be represented in the EHR to support both patients and professionals in the shared decision-making process and enable PCC. The aim of this paper is therefore to investigate how to represent the patient voice in an EHR. This was a qualitative study of a co-design process with six patient-partners and a team of healthcare personnel. The result of the process was a template for the information needed to represent the patients' voice in the EHR based on three questions: "What is important for you right now?". "What matters to you in your life?". "What do you want your care team to know about your history?".

"My cancer is not my deepest concern": life course disruption influencing patient pathways and health care needs among persons living with colorectal cancer.

BACKGROUND: The concept of "patient pathways" in cancer care is most commonly understood as clinical pathways, operationalized as standardized packages of health care based on guidelines for the condition in question. In this understanding, patient pathways do not address multimorbidity or patient experiences and preferences. This study explored patient pathways understood as the individual and cultural life course, which includes both life and health events. The overall aim was to contribute to supportive and targeted cancer care. MATERIALS AND METHODS: Nine Norwegian patients recently diagnosed with rectal cancer Tumor-Node-Metastasis stage I-III participated in qualitative interviews, five times over 1 year. Five patients later participated in a workshop where they made illustrations of and discussed patient pathways. RESULTS: Patient pathways including both health and life events were illustrated and described as complex and circular. Stress, anxiety, and depression caused by life events had significant disruptive effects and influenced patient-defined health care needs. The participants experienced the Norwegian public health service as focused on hospital-based standardized cancer care. They expressed unmet health care needs in terms of emotional and practical support in their everyday life with cancer, and some turned to complementary and alternative medicine. CONCLUSION: This study suggests that acknowledging life course disruption before cancer diagnosis may have significant relevance for understanding complex patient pathways and individual health care needs. Approaching patient pathways as individual and socially constructed may contribute important knowledge to support targeted cancer care.

Associations between primary healthcare and unplanned medical admissions in Norway: a multilevel analysis of the entire elderly population.

OBJECTIVE: To examine if individual risk of unplanned medical admissions (UMAs) was associated with municipality general practitioner (GP) or long-term care (LTC) volume among the entire Norwegian elderly population. DESIGN: Cross-sectional population-based study. SETTING: 428 of 430 Norwegian municipalities in 2009. PARTICIPANTS: All Norwegians aged ≥65 years (n=721 915; 56% women-15% of the total population). MAIN OUTCOME MEASURE: Individual risk of UMA. RESULTS: Using a multilevel analytical framework, consisting of individuals (N=722 464) nested within municipalities (N=428), nested within local hospital areas (N=52) we found no association between municipality GP or LTC volume and UMAs. However, we found that higher LTC levels of provision were associated with fewer hospitalisations among the older age groups. A modest geographical variability was observed for UMA in adjusted analysis. CONCLUSIONS: A higher primary healthcare volume was only associated with fewer UMAs among the oldest old in a universally accessible healthcare system.

Is a high level of general practitioner consultations associated with low outpatients specialist clinic use? A cross-sectional study.

OBJECTIVE: To examine if increased general practice activity is associated with lower outpatient specialist clinic use. DESIGN: Cross-sectional population based study. SETTING: All 430 Norwegian municipalities in 2009. PARTICIPANTS: All Norwegians aged ≥65 years (n=721 915; 56% women-15% of the total population). MAIN OUTCOME MEASURE: Specialised care outpatient clinic consultations per 1000 inhabitants (OPC rate). Main explanatory: general practitioner (GP) consultations per 1000 inhabitants (GP rate). RESULTS: In total, there were 3 339 031 GP consultations (57% women) and 1 757 864 OPC consultations (53% women). The national mean GP rate was 4625.2 GP consultations per 1000 inhabitants (SD 1234.3) and the national mean OPC rate was 2434.3 per 1000 inhabitants (SD 695.3). Crude analysis showed a statistically significant positive association between GP rates and OPC rates. In regression analyses, we identified three effect modifiers; age, mortality and the municipal composite variable of 'hospital status' (present/not present) and 'population size' (small, medium and large). We stratified manually by these effect modifiers into five strata. Crude stratified analyses showed a statistically significant positive association for three out of five strata. For the same three strata, those in the highest GP consultation rate quintile had higher mean OPC rates compared with those in the lowest quintile after adjustment for confounders (p<0.001). People aged ≥85 in small municipalities had approximately 30% lower specialist care use compared with their peers in larger municipalities, although the association between GP-rates and OPC-rates was still positive. CONCLUSIONS: In a universal health insurance system with high GP-accessibility, a health policy focusing solely on a higher activity in terms of GP consultations will not likely decrease OPC use among elderly.

Does long-term care use within primary health care reduce hospital use among older people in Norway? A national five-year population-based observational study.

BACKGROUND: Population ageing may threaten the sustainability of future health care systems. Strengthening primary health care, including long-term care, is one of several measures being taken to handle future health care needs and budgets. There is limited and inconsistent evidence on the effect of long-term care on hospital use. We explored the relationship between the total use of long-term care within public primary health care in Norway and the use of hospital beds when adjusting for various effect modifiers and confounders. METHODS: This national population-based observational study consists of all Norwegians (59% women) older than 66 years (N = 605676) (13.2% of total population) in 2002-2006. The unit of analysis was defined by municipality, age and sex. The association between total number of recipients of long-term care per 1000 inhabitants (LTC-rate) and hospital days per 1000 inhabitants (HD-rate) was analysed in a linear regression model. Modifying and confounding effects of socioeconomic, demographic and geographic variables were included in the final model. We defined a difference in hospitalization rates of more than 1000 days per 1000 inhabitants as clinically important. RESULTS: Thirty-one percent of women and eighteen percent of men were long-term care users. Men had higher HD-rates than women. The crude association between LTC-rate and HD-rate was weakly negative. We identified two effect modifiers (age and sex) and two strong confounders (travel time to hospital and mortality). Age and sex stratification and adjustments for confounders revealed a positive statistically significant but not clinically important relationship between LTC-rates and hospitalization for women aged 67-79 years and all men. For women 80 years and over there was a weak but negative relationship which was neither statistically significant nor clinically important. CONCLUSIONS: We found a weak positive adjusted association between LTC-rates and HD-rates. Opposite to common belief, we found that increased volume of LTC by itself did not reduce pressure on hospitals. There still is a need to study integrated care models for the elderly in the Norwegian setting and to explore further why municipalities far away from hospital achieve lower use of hospital beds.