| Literature DB >> 32451982 |
Abstract
PURPOSE: To rectify the significant mismatch observed between what matters to patients and what clinicians know, our research group developed a standardized assessment, information, and networking technology (SAINT).Entities:
Keywords: Guided healthcare; Health confidence; Howsyourhealth.org; Patient engagement; Risk assessment; What Matters Index
Mesh:
Year: 2020 PMID: 32451982 PMCID: PMC8528738 DOI: 10.1007/s11136-020-02528-z
Source DB: PubMed Journal: Qual Life Res ISSN: 0962-9343 Impact factor: 4.147
The What Matters Index and recommended actions based on responses
| Patient-reported measure | Examples of medical assistant actions for concerns or problems |
|---|---|
| Insufficient health confidence | |
How confident are you that you can manage and control most of your health problems? | You indicated that you are only somewhat or not very confident to manage and control your health problems. The health problems you find most difficult to manage and control are: ––––– What would it take to increase your health confidence to better manage and control these problems? ––––– |
| Pain | |
During the past 4 weeks how much bodily pain have you generally had? | Is your doctor or nurse aware of pain or emotional problem(s)? Yes No or not sure → referral to health professional How much is (are) your pain/emotional problem(s) making it difficult for you to be confident about managing your health? |
| Emotions | |
During the past 4 weeks how much have you been bothered by emotional problems such as feeling anxious, irritable, depressed, or sad? | Making it very difficult Making it somewhat difficult Not much impact |
| Polypharmacy | |
How many prescription medicines are you taking more than 3 days a week? | The last time a health professional reviewed them with the patient or caregiver was more than 2 months (or not at all) → referral to a health professional |
| Adverse effects from medicines | |
| Do you think any of your pills are making you sick? | |
The "What Matters Index" is the sum of the five binary scores with an index of zero meaning lowest reported problems and an index of five meaning highest reported problems
Reprinted with permission [37]
Fig. 1The What Matters Index as an effective SAINT: an immediate guide for care to reduce risk for costly emergency or hospital use
Suggestions for enhancing SAINT value, dissemination, and sustainability
| √ or | If no √, this is a threat | Explanation |
|---|---|---|
| Enhancing SAINT value | ||
| Goal: patient quality of life | Patients’ engagement is highest when the SAINT generates service for what matters to them; measurements for comparison and process adherence are secondary | |
| Stakeholder: the patient-clinician dyad | Although payers, purchasers, and policymakers can be partners, front-line engagement of both the patient and clinician is critical for success and co-production of best care | |
| Focus: data guides action | Service, not just survey: multi-item, psychometrically elegant data are often not intended for action | |
| Latency: short | Long latency and retrospective data undermine accuracy and action | |
| Stratification: offer a registry | Data are used to sort groups of patients for subsequent interventions | |
| Customizable: for practice | Facilitates adaption to and adoption in multiple settings | |
| Portable: for patient | Enhances recall, useful communication with others, updating and monitoring | |
| Improving: summaries | Ongoing assessment of clinician and practice performance | |
| Behavioral: automates | Minimizes variation and effort needed to implement initial behavioral interventions | |
| Links: community and other | Minimize to only highly relevant links | |
| Online consent: for follow-up | Useful to the practice or clinician for longitudinal quality and research projects | |
| Enhancing SAINT dissemination | ||
| SAINT product design: simple | Start with the core functions and basic display; continuously test variations | |
| Process fit: timing | Reduce initial patient implementation target by half and double the time | |
| Helper: patient volunteers? | Patients of practice may volunteer to assist; build on small successes | |
| Enhancing SAINT sustainability | ||
| Engineer at outset: small burn | Burn refers to the amount of money needed to design and maintain | |
| C-Monsters: be vigilant | Watch out for the most common destructive forces: high burn rates and loss of control | |
| C-Monsters—adversely influence value, dissemination and sustainability | ||
| Content | Minimize medical advice to decrease liability; there are few insurers who cover SAINTs | |
| Consent for identifier (privacy) | Offer best content regardless of patient identifier; postpone identifier to later in process | |
| Control | Business models and regulations of a country impact who and how a SAINT is controlled; consideration of the short- and long-term consequences is necessary | |
| Culture | Translation of measures into another language and back to the original before widespread dissemination to mitigate obscure interpretations or unsuitable cultural content | |
| Copyrighted materials | High value SAINTs should allow fair use; avoid expensive and restrictive licenses | |
| Computer coding | Open source software provides common, time-tested code to minimize maintenance | |
| Confusing commercialism: e.g. electronic Medical record | Proprietary interests and inflexibility impede data import; priorities should support patient/clinician coproduction of care and a patient-controlled portable health plan/record | |
| Certification | Adopt the highest ethical standards; then estimate the added value of certification | |
Fig. 2Percent of patients in US hospital service areas (HSAs) reporting they are very confident that they understand and can manage most of their health problems; data from HowsYourHealth.org were matched with HSAs defined by the Dartmouth Atlas of Health Care [48]
Fig. 3Patients with diabetes describe what they need to attain greater health confidence: Based on verbatim responses, exemplified at right, of more than 600 patients collected via HowsYourHealth.org since 2017, excluding “don’t know” or uninterpretable responses. The WMI (What Matters Index) is the sum of five patient-reported problems and concerns: a insufficient confidence to self-manage health problems, b pain, c bothersome emotions, d polypharmacy, and e adverse medication effects
Self-report from diabetic patients illustrating how a What Matters Index guides care and is an expedient proxy for what else might matter
| Sum of What Matter Index is | ||||
|---|---|---|---|---|
| 0 | 1 | 2 | 3 | |
| Number | 2205 | 3197 | 2491 | 2327 |
| WMI guidelines indicated | ||||
| Not health confident | NA | 63 | 80 | 94 |
| Bothersome pain | NA | 8 | 32 | 75 |
| Bothersome emotional problems | NA | 3 | 14 | 47 |
| Medications may be causing illness | NA | 7 | 36 | 68 |
| Poly-pharmacy (more than 5 medications/day) | NA | 21 | 42 | 73 |
| What else might matter | ||||
| Examples of self-management engagement | ||||
| Has received good explanation for chronic condition(s) | 82 | 68 | 56 | 43 |
| Almost always checking and controlling blood sugar | 68 | 56 | 50 | 42 |
| Checks blood pressure regularly | 70 | 59 | 54 | 46 |
| Exercises at least three times a week | 50 | 30 | 24 | 14 |
| Usually eats healthy meals | 76 | 63 | 53 | 34 |
| Examples of major limitations, symptoms and concerns | ||||
| Poverty: does not often have money for everyday needs | 12 | 20 | 33 | 49 |
| Very limited social support | 7 | 11 | 16 | 34 |
| Very limited social activities | 1 | 2 | 9 | 32 |
| Very limited daily activities | 1 | 4 | 10 | 41 |
| Very limited physical capacity | 5 | 11 | 14 | 29 |
| Significant sleep limitations | 7 | 17 | 28 | 51 |
| Concern about violence and abuse | 3 | 5 | 7 | 15 |
| Examples of common reimbursable foci for clinical care | ||||
| Additional diagnoses | ||||
| Hypertension | 53 | 62 | 71 | 79 |
| Arthritis | 20 | 28 | 41 | 62 |
| Respiratory | 12 | 15 | 22 | 37 |
| Atherosclerosis | 8 | 16 | 23 | 40 |
| Risks | ||||
| BMI > 30 (obese) | 45 | 54 | 62 | 71 |
| Previous recalled systolic blood pressure > 150 | 18 | 20 | 26 | 35 |
| Previous recalled blood sugar > 140 (7.8 I.U.) | 23 | 33 | 39 | 49 |
| Current smoker | 10 | 12 | 18 | 30 |
| Costly health care and care quality | ||||
| Recent emergency department or hospital use | 13 | 19 | 28 | 49 |
| Any of emergency or hospital uses possibly avoidable | 17 | 31 | 44 | 56 |
| Any healthcare-related harms during previous year | 0.6 | 0.9 | 1.6 | 5.0 |
| Continuous care from a doctor or nurse | 88 | 86 | 83 | 80 |
| Using a specialist | 38 | 44 | 51 | 59 |
| If using a generalist and a Specialist, one is in charge | 89 | 85 | 81 | 72 |
| Easy access | 67 | 49 | 39 | 29 |
| Receiving exactly the care needed | 59 | 40 | 31 | 18 |
Numbers in the table body are a percentage of the respondents in each column
Wording and cutpoints for these patient-reported measures are available at https://howsyourhealth.org/html/adult_survey.pdf