Skip to content Skip to sidebar Skip to footer
Home / Patientfocused Assessment the Art and Science of Clinical Data Gathering Pdf

Patientfocused Assessment the Art and Science of Clinical Data Gathering Pdf

Post a Comment
  1. News & Views
  2. Patient focused...
  3. Patient focused registries can improve health, intendance, and scientific discipline

Analysis

Patient focused registries can ameliorate health, intendance, and science

BMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i3319 (Published 01 July 2016) Cite this as: BMJ 2016;354:i3319

Loading

  1. Eugene C Nelson , professor1,
  2. Mary Dixon-Woods , professor2,
  3. Paul B Batalden , professor1,
  4. Karen Homa , researcher3,
  5. Aricca D Van Citters , researcherane,
  6. Tamara S Morgan , researcher1,
  7. Elena Eftimovska , professor4,
  8. Elliott S Fisher , professorane,
  9. John Ovretveit , professorfour,
  10. Wade Harrison , researcherane,
  11. Cristin Lind , professorv,
  12. Staffan Lindblad , professor4 5
  1. oneDartmouth Institute for Health Policy and Clinical Practice, Geisel Schoolhouse of Medicine, Dartmouth College, 1 Medical Center Bulldoze, Lebanon, NH 03766, United states
  2. iiPlant of Public Wellness, Academy of Cambridge School of Clinical Medicine, Cambridge, Britain
  3. threeDartmouth-Hitchcock Health, Lebanon, NH, USA
  4. fourMedical Direction Eye, Karolinska Institutet, Stockholm, Sweden
  5. 5Quality Register Center Stockholm, Karolinska Institutet and Stockholm County Quango, Stockholm, Sweden
  1. Correpondence to: T South Morgan tamara.due south.morgan{at}dartmouth.edu

Eugene Nelson and colleagues phone call for registries of care data to be transformed into patient centred interactive learning systems

Big scale collection and assay of data on patients' experiences and outcomes have get staples of successful health systems worldwide. The systems become by diverse names—including registries, quality registries, clinical databases, clinical audits, and quality improvement programmes1 ii— but all collect standardised information on patients' diagnoses, intendance processes, and outcomes, enabling systematic comparison and assay across multiple sites. Hundreds of what we will term, for simplicity, "registries," now exist effectually the world. The United Kingdom is home to over l clinical audit programmes,3 the United States has over 110 federally qualified registries certified to report quality metrics,four and Sweden, perhaps the registry epicentre, has over 100, covering conditions from nascency to frail old age.5

These registries have had far reaching effects. They facilitate public reporting, retrospective and prospective research, professional evolution, and service improvement. They reveal variations in practices, processes, and outcomes, and identify targets for improvement. In the U.k., they take been associated with many notable successes, including improvements in direction of cardiovascular illness and stroke,6 7 cancer,8 and joint replacement.9

Unmet potential

Nevertheless, few registries take realised their total potential. Feedback of information to participating clinical centres ofttimes lags well behind actual care, making data obsolete and less useful. Many registries take not caught up with the digital era, continuing to rely on manual information entry (and ofttimes double entry), which is tedious, expensive, and prone to mistake. The data may be restricted to a small-scale number of uses, rather than being used for multiple purposes. Perhaps nearly problematic of all is that many registries have limited patient involvement in their design, oversight, or operations.10 Patients may not be asked to identify their priorities for data to exist collected, so the data generated may only partly reflect what matters to them..11 Patients do not unremarkably have admission to the data collected (even when information technology is well-nigh them) or opportunities to add data outside medical encounters. This ways they cannot use the data to support self direction or shared decision making.

Signs of change are, notwithstanding, showtime to appear. The UK's Healthcare Quality Improvement Partnership (HQIP) has an explicit patient and public involvement policy, and at present includes patient representatives when developing specifications for its registries. National clinical audits in the UK, similar those in Sweden, the Netherlands, and elsewhere,12 13 are also beginning to incorporate patient reported outcomes aslope clinical measures.14

In the Netherlands, the Parkinson'southward affliction registry not just tracks strains on care givers besides as patient- and clinician-reported outcomes, information technology involves patients, families, physicians, and clinical scientists in developing guidelines to promote a consistently high standard of intendance.12 In the The states, the ImproveCareNow network for inflammatory bowel illness engages patients and families alongside care teams and scientists in its design, governance, and operation,15 enabling improved sensitivity to what matters to patients. Thus, though the registry had initially focused on measuring elementary remission rates, partnering with patients revealed that patients and their families were more than interested in prolonged, steroid-free remissions, which accept improved from 55% to 78% in participating practices.16 The network has at present added two UK sites (in Cambridge and London).

An especially exciting evolution is that some registries are gaining the capacity to collect data on patients' priorities and back up care in real fourth dimension.17 The Swedish Rheumatology Quality Registry shows what can be accomplished through this kind of patient centred approach. It enables patients to track symptoms at home to identify early signs of increased disease activeness, supporting them to coproduce better care with their clinicians.18 The practices participating in the registry have documented a 50% decrease in inflammatory activity among people with rheumatoid arthritis.xix

Model for coproduction of wellness, healthcare improvement, and enquiry

The growing emphasis on patient centredness in registries is consequent with the recognition of the importance of active partnerships between patients, clinicians, and health scientists to improve wellness, healthcare services, and enquiry.20 21 Patient centred registries could help realise the vision for a learning health system articulated by the US Found of Medicine every bit one where "knowledge generation is so embedded into the core of the practice of medicine that information technology is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in intendance." 22 In such a system, patient outcomes and experiences, every bit well every bit other valuable information, are continuously monitored and available in existent time to both clinicians and patients to facilitate their articulation work; importantly, the information are explicitly collected with a view to multiple uses and can be repurposed to support service improvement and scientific inquiry.

Building on the construction and function of the registries described above, and the possibilities now offered by the rapid digitisation of healthcare, we have developed a generalisable model for a registry based, patient centred learning organisation for coproducing health comeback and research (box i). A key feature of learning systems is that they are not only a technical infrastructure: they are governed by strong values and a commitment to collective learning, not dissimilar Mintzberg and colleagues' vision of a learning civilisation.23

Box ane: Fundamental features of registry based learning systems

  • Social network of patients and families encouraged to appoint in the patient'south healthcare and supported past tools that enable them to track their wellness outcomes and back up cocky care

  • Collaborative network of clinical teams that can provide care and who appoint in a organisation providing longitudinal and comparative data

  • Sharing of power and responsibility among patients, clinicians, and scientists for designing, governing, and evaluating services, improvement, and enquiry

  • Digital collection and utilize of both clinical and patient reported outcomes to guide care and as a basis for improvement, research, and public wellness policy

  • Demonstration of measurable comeback in individual and public wellness outcomes through improved adherence to electric current evidence and rigorous trials of new approaches

  • Dissemination and translation of ideas and findings through publication in peer reviewed journals, presentations at meetings, and outreach to patients, clinicians, researchers, and health policy analysts

Our model brings together patients and families with clinicians and care teams to class a partnership (fig i⇓). Box two shows the primary mechanisms supporting the system. One defining feature is that patients are able to share their perceptions of wellness, function, and wellbeing with their care team in real time; they can select measures that matter to them and enter their data outside clinical encounters, enabling them to monitor and continually assess their health. They can contribute to pre-visit planning, assistance in monitoring treatment responses, and assistance to ensure that resources are being used for outcomes that truly matter to them.

Box 2: Key mechanisms used to build a registry based learning organization

  • Information "feed forward" systems—Patient reported and clinical data are continuously bachelor both for patients and at the point of intendance for tracking health and planning care

  • Decision support "dashboards"—Graphs of patient level information over time enable patients and clinicians to discover relations between symptoms and interventions

  • Reports for patients and clinicians—Registry information are returned to both the patient and the clinician in meaningful summary reports that testify trends over fourth dimension. As a past product, registry databases tin provide comparative data for practice comeback, research, and public reporting

  • Patient and clinician facilitated networks—Patient facilitated networks can foster social back up and learning among patients with similar wellness weather. Likewise, clinician facilitated networks can support the work of interdisciplinary care teams. Both types of networks ideally are co-curated by patients and professionals and provide information to support optimal health and high value care

  • Multistakeholder engagement—Collaborative networks including patients, clinicians, and researchers work together to share expertise, measurably improve outcomes and healthcare value, and conduct required research

Box three shows how themodel works using the example of the Swedish rheumatology registry, which features consultations in which the patient and clinician sit down together in front end of a dashboard displaying the patient'south treatments and self reported outcomes as well as population based clinical, experiential, and functional data. The information supports patients and clinicians to go competent, confident, and equal partners who can share decisions.25 The dashboard is fed by a shared clinical database that is autopopulated past patient reported and clinical data that menses into and out of electronic and personal health records.

Box 3: How the Swedish Rheumatology Quality Registry works

Shared intendance (http://www.youtube.com/spotter?v=wjhkP8t1EmM)

Karin Arvidsson is a middle anile professional person woman who loves gardening. She adult rheumatoid arthritis several years ago and has taken four biological drugs that brand her life much better. She manages her arthritis past "working with my doctor and my computer," saying that being able to track her outcomes "helps me go through bad periods past myself." Her trusted physician, Anita Domargard, says that Arvidsson is one of 25 000 Swedish patients in the national registry that tracks care using nationally agreed outcomes and allows her to "compare her results to the balance of Sweden."

Domargard and Arvidsson sit together when they meet for a visit and view a dashboard that shows Arvidsson'southward longitudinal outcomes (functional status, quality of life, joint counts, C reactive protein, etc) and her medications. They then decide which types of drugs are well-nigh likely to work best. Domargard says that she feels confident that the expensive drugs "are used in the best way."

Quality improvement (http://world wide web.youtube.com/watch?five=wjhkP8t1EmM.)

In 2008, Sven Tegmark became the director for rheumatology care for Gävle County, which provides services in four locations. His rheumatology program had been participating in the registry for many years; unfortunately, the comparative results showed that the county'due south patients had highly variable outcomes that were worse than the residuum of Sweden.

Tegmark decided to apply the registry to brand ii key improvements in the fashion care was delivered to Gävle's rheumatology patients. Firstly, he encouraged all of the physicians to use the outcomes "dashboards" with every patient. Secondly, he developed a new delivery model that they call an "open-tight" system.24 In effect, patients were encouraged to use the dashboards at home to rails outcomes and determine if they were in remission. If they were doing well, they were "open up" to visit their physicians but making a visit was upwards to them. Only if their outcomes suggested that they were out of remission, they were encouraged to make an appointment immediately and would be "tightly" cared for until they once more accomplished remission. This helped make it possible for patients to be seen when they really needed to be seen and to use enlightened self direction when they were doing well. The outcomes for Gävle County'due south patients improved substantially afterwards these changes (fig 2⇓) such that they had better outcomes than those in the balance of Sweden.

The functions and possibilities of a registry based learning organisation become well across the patient-clinical squad dyad. The "small data" reported past patients and clinicians are recorded longitudinally in a secure registry platform. Configured accordingly, and with the right governance arrangements in identify, this database can exist used for many purposes: it creates opportunities for patients and families to go continuous real time access to peer and professional person back up using curated, facilitated networks26 and for clinicians to access collaborative improvement networks. It tin can be used to generate information to support activities to meliorate services, reducing the data burden for such activities and facilitating a more patient centred approach to improvement. Clearly, the database will exist invaluable for many forms of inquiry, including observational studies, n of 1 experiments, augmentation of results from randomised controlled trials, identification of participants for trials, and as the basis of studies where randomisation is neither appropriate nor practical.27 28 Linking the database to other data sources, perhaps building on the Farr Plant for Health Informatics Research model (http://world wide web.farrinstitute.org) of networking existing data sources into a larger, more information rich informatics structure, opens up new possibilities for patient centred research.

Discussion

The increasing recognition that patients and their families should be involved in leadership of registries29 and the growth in technical capacities and methods of measurement offer enormous opportunities to bring together the interests and energies of patients and families, healthcare teams, and researchers.30 The part that patient centred registries could play in creating the conditions for a learning healthcare organization within the NHS deserves careful consideration.31 32 Founded on principles of coproduction, the model that nosotros propose facilitates equal partnerships between patients and clinicians. The model intentionally aligns with the patient's self-defined needs and priorities and refigures the opportunities for conclusion making. It is specially relevant for people with chronic conditions, who rely on self monitoring and self management to reach optimal health. The aim is to shift healthcare from a series of episodic encounters to a organisation in which everyone concerned about a person'south wellness—patients, families, clinicians, scientists, policy makers, and purchasers/commissioners—has the information they need for effective care, advancing knowledge, and improving services.

The model does non, of course, promise a utopia. Some agin consequences and risks tin exist anticipated, including those linked to the so called "quantified self," where patients are seen equally under surveillance and control (rather than empowered citizens).33 Innovators must continue in listen the adventure that registry participants will focus too much on the numbers tracked past their fitness devices, rather than on the more complex goal of overall health.33 It will also be important to ensure that the model does not inadvertently create or exacerbate inequalities; some older people, for case, may go along to adopt paper based methods of data collection, and "big data" may create new forms of disadvantage. Issues of governance and regulation, including merely non limited to the use of clinical data for enquiry and other purposes, will need to be carefully worked through. Data security for registries will exist critical, every bit will models of consent that are sufficiently agile to respect patients' preferences and to cope with evolution of systems and changes in the purposes for which information may be used and in who may admission and use which information over time.34 Although many problems volition need to be overcome,35 successful registries indicate solutions are possible (box iv).

Box four: Addressing challenges for patient centred learning systems

  • Motivating participation—Focus on of import, measurable, and improvable health outcomes (eg, torso mass index, remission rates)

  • Organising, governing, and sharing power and influence—Use community organising and peer production (eg, open source software evolution) principles and methods to start and manage the operation

  • Finding ways to collect, display, and use "dashboards" into clinical workflows without adding extra work—Utilise trained coaches to upload existing data and then piece of work with frontline clinicians and staff to adopt new work routines using the dashboard

  • Empowering patients to brand decisions and cocky manage—Use the determination support dashboard as a catalyst for shared decision making and cocky management plans. Employ a shared governance model (patients, clinicians, scientists) for planning, designing, and governing work

  • Efficiently collecting valid patient reported and clinical data in busy practices beyond different electronic platforms—Apply a third party, cyberspace based solution to extract selected clinical information elements from the electronic health record and the clinician, to collect self reported measures from patients using validated tools, and to instantly display all data in the dashboard. All of this can be done using secure, privacy protected processes

  • Using data for learning, transparent reporting, and quality improvement—Existing systems provide comparative, case-mix adapted reports on variations in outcomes across practices, and encourage practice based improvements and adoption of best practices. They hold annual meetings to review performance, hash out lessons, and promote specific improvements

  • Spreading and sustaining the system—The Swedish registry covers the whole state and is funded from various sources, including regime, foundations, and life scientific discipline companies. ImproveCareNow has grown to include 80 paediatric specialty practices in only five years and is funded through membership fees

Registry based learning systems could unite patients, clinicians, and researchers to strive for, and ultimately coproduce, optimal health, loftier value services, and new noesis that can be rapidly deployed to benefit private patients and the public. Today's registries have brought u.s. a long way in improving healthcare; tomorrow's registries, equally patient centred learning systems, could bring usa even further.

Key messages

  • Registries can evolve to become patient centred learning systems in which patients, clinicians, and scientists coproduce amend wellness outcomes, improved services, and patient centred research

  • They can be used to brand "dashboards" integrating patient reported and clinical data to support decisions about care

  • Registry information tin exist used to support practice based quality improvement, comparative benchmarking reports, and peer networks for clinicians and patients

Footnotes

  • Contributors and sources: This commodity is based on a literature review and ecology scan that was conducted with support from the Robert Woods Johnson Foundation. ECN, PBB, EE, and SL have expertise in patient registries, clinical collaborative, and quality comeback; KH and CL have expertise in patient centred care; MD-Due west and JO have expertise in improvement and implementation science; ADVC and WH have expertise in formal literature reviews and programme evaluation; TSM and ESF have expertise in public policy, communications. and healthcare delivery science. ECN is the guarantor.

  • Competing interests We have read and understood BMJ policy on declaration of interests and declare ECN owns stock in Quality Information Management. This work is supported past funding from the Robert Wood Johnson Foundation (Grants: #71211 and 72313), the Cystic Fibrosis Foundation (Grant #OCONNO04Q10), and the Crohn's and Colitis Foundation of America Quality of Care Initiative (Grant #3372). TSM was funded past the Multidisciplinary Clinical Research Heart for Musculoskeletal Diseases at Dartmouth (P60 AR-062799), sponsored by the National Plant for Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health. EE was funded by the Swedish Research Council for Health, Work Life and Welfare (#2014-4238). MD-W is supported by a Wellcome Trust senior investigator award (WT09789).

This is an Open Admission article distributed in accordance with the Creative Eatables Attribution (CC BY iv.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. Run into: http://creativecommons.org/licenses/by/4.0/ .

References

  1. ↵

    McNeil JJ, Evans SM, Johnson NP, Cameron PA. Clinical-quality registries: their role in quality comeback. Med J Aust 2010;192:244-5.pmid:20201755.

  2. ↵
  3. ↵

    Healthcare Quality Improvement Partnership. NHS England quality accounts list. 2016-17. http://www.hqip.org.uk/media/NHSE%20QA%20list%202016-17%20(published%2012.01.16).pdf

  4. ↵

    Richardson D. National Quality Registry Network. Overview. NQRN, 2014.

  5. ↵
  6. ↵
  7. ↵

    Gale CP, Weston C, Denaxas South, et al. NICOR Executive. Engaging with the clinical data transparency initiative: a view from the National Institute for Cardiovascular Outcomes Enquiry (NICOR). Heart 2012;98:1040-3. doi:10.1136/heartjnl-2012-302469 pmid:22739635.

  8. ↵

    Cornish JA, Tekkis PP, Tan Due east, Tilney HS, Thompson MR, Smith JJ. The national bowel cancer audit projection: the impact of organisational structure on result in operative bowel cancer inside the United kingdom. Surg Oncol 2011;20:e72-7. doi:10.1016/j.suronc.2010.10.005 pmid:21071208.

  9. ↵

    Smith AJ, Dieppe P, Vernon K, Porter M, Blom AW. National Joint Registry of England and Wales. Failure rates of stemmed metal-on-metallic hip replacements: analysis of information from the National Articulation Registry of England and Wales. Lancet 2012;379:1199-204. doi:10.1016/S0140-6736(12)60353-5 pmid:22417410.

  10. ↵
  11. ↵
  12. ↵

    Bloem BR, Munneke M. Revolutionising direction of chronic disease: the ParkinsonNet approach. BMJ 2014;348:g1838.pmid:24647365.

  13. ↵
  14. ↵
  15. ↵

    Crandall W, Kappelman Doc, Colletti RB, et al. ImproveCareNow: the development of a pediatric inflammatory bowel disease improvement network. Inflamm Bowel Dis 2011;17:450-7. doi:10.1002/ibd.21394 pmid:20602466.

  16. ↵

    Forrest CB, Margolis P, Seid K, Colletti RB. PEDSnet: how a image pediatric learning health system is being expanded into a national network. Health Aff (Millwood) 2014;33:1171-7. doi:10.1377/hlthaff.2014.0127 pmid:25006143.

  17. ↵

    Eriksson JK, Askling J, Arkema EV. The Swedish Rheumatology Quality Register: optimisation of rheumatic disease assessments using register-enriched data. Clin Exp Rheumatol 2014;32(Suppl 85):S147-9.pmid:25365105.

  18. ↵
  19. ↵

    Svensk Reumatologis Kvalitetsregister. Årsrapport 2012 [Swedish Rheumatology Quality Registry'southward almanac report 2012 ] 2013.

  20. ↵

    Wagner EH, Glasgow RE, Davis C, et al. Quality improvement in chronic disease care: a collaborative approach. Jt Comm J Qual Improv 2001;27:63-80.pmid:11221012.

  21. ↵
  22. ↵

    Aisner D, Olsen L, McGinnis JM, eds. The learning healthcare organization: workshop summary. IOM roundtable on evidence-based medicine, 20-21 Jul 2005. National Academies Printing, 2006

  23. ↵

    Mintzberg H, Ahlstrand B, Lampel J. Strategy safari: a guided tour through the wilds of strategic direction.Simon & Schuster, 2005.

  24. ↵

    Fredriksson C, Ebbevi D, Waldheim Due east, Lindblad S, Ernestam S. Patient-initiated appointments compared with standard outpatient treat rheumatoid arthritis: a randomised controlled trial. RMD Open 2016;ii:e000184. doi:10.1136/rmdopen-2015-000184 pmid:27042334.

  25. ↵
  26. ↵

    Christensen CM, Grossman JH, Hwang J. The innovator's prescription: a disruptive solution for health intendance.McGraw-Colina Education, 2008.

  27. ↵
  28. ↵
  29. ↵

    Gliklich REDN, Leavy MB, eds. Chapter two: planning a registry. In: Registries for evaluating patient outcomes: a user'south guide, 3rd ed. Agency for Healthcare Research and Quality, 2014. http://www.ncbi.nlm.nih.gov/books/NBK208616/.

  30. ↵
  31. ↵

    Institute of Medicine. The learning health system and its innovation collaboratives: update report.IOM, 2011.

  32. ↵
  33. ↵
  34. ↵

    Laurie One thousand, Ainsworth J, Cunningham J, et al. On moving targets and magic bullets: Can the UK pb the way with responsible data linkage for health research?Int J Med Inform 2015;84:933-twoscore. doi:ten.1016/j.ijmedinf.2015.08.011 pmid:26342668.

  35. ↵

View Abstract

morrissphe1974.blogspot.com

Source: https://www.bmj.com/content/354/bmj.i3319

Post a Comment for "Patientfocused Assessment the Art and Science of Clinical Data Gathering Pdf"