The aim of this article is to introduce key definitions to patient access and a measurement approach, translated for a clinic-based research study or program evaluation. The authors hope this piece will provide those seeking to improve access with some basic starting points and replace rhetoric with rigor in evaluation. Issues discussed include defining access for measurement, measuring access, starting with the end point in mind, and using a logic model.

Yes / In England, primary care patients have access to Patient Access Portals (PAPs), enabling them to book appointments, request repeat medication prescriptions, send/receive messages and review their medical records. Few studies have elicited user views and value of PAPs, especially in a publicly funded primary care setting. This study aimed to elicit the value users of PAPs place on online access to medical records and linked services. Secondary data analysis of the completed electronic survey (available 2 May 2015–27 June 2015) distributed via the EMIS PAP to all its registered users. EMIS designed the survey; responses were voluntary. There were 62,486 responders (95.7% self-completed). The PAP was mainly used for medication requests (86.3%) and online appointment bookings (78.4%), and, to a lesser extent, medical record viewing (18.3%) and messaging (9.5%). The majority (70%) reported a positive impact from using it. One in five rated it as their favourite online service second only to online banking. Almost three out of four responders stated that availability of online access would influence their move to another practice. Nonetheless, responders were reluctant to award a high monetary value to it. These findings correlated with the number of long-term conditions. The majority of users place a relatively high value, but not monetary value, on the PAP and report a positive impact from using it. The potential for PAPs to enhance patient experience, especially for those with long-term conditions, appears to be largely untapped. Research exploring the reasons for non-use is also required.

abstract: This dissertation addresses access management problems that occur in both emergency and outpatient clinics with the objective of allocating the available resources to improve performance measures by considering the trade-offs. Two main settings are considered for estimating patient willingness-to-wait (WtW) behavior for outpatient appointments with statistical analyses of data: allocation of the limited booking horizon to patients of different priorities by using time windows in an outpatient setting considering patient behavior, and allocation of hospital beds to admitted Emergency Department (ED) patients. For each chapter, a different approach based on the problem context is developed and the performance is analyzed by implementing analytical and simulation models. Real hospital data is used in the analyses to provide evidence that the methodologies introduced are beneficial in addressing real life problems, and real improvements can be achievable by using the policies that are suggested. This dissertation starts with studying an outpatient clinic context to develop an effective resource allocation mechanism that can improve patient access to clinic appointments. I first start with identifying patient behavior in terms of willingness-to-wait to an outpatient appointment. Two statistical models are developed to estimate patient WtW distribution by using data on booked appointments and appointment requests. Several analyses are conducted on simulated data to observe effectiveness and accuracy of the estimations. Then, this dissertation introduces a time windows based policy that utilizes patient behavior to improve access by using appointment delay as a lever. The policy improves patient access by allocating the available capacity to the patients from different priorities by dividing the booking horizon into time intervals that can be used by each priority group which strategically delay lower priority patients. Finally, the patient routing between ED and inpatient units to improve the patient access to hospital beds is studied. The strategy that captures the trade-off between patient safety and quality of care is characterized as a threshold type. Through the simulation experiments developed by real data collected from a hospital, the achievable improvement of implementing such a strategy that considers the safety-quality of care trade-off is illustrated. / Dissertation/Thesis / Doctoral Dissertation Industrial Engineering 2019

The objective of this study was to explore inpatients’ opinions on their hospital paper medical records after they had incidental access to them. One hundred inpatients in the C.T. department at St. Michael's Hospital were surveyed: 65 patients who read their records and 35 who did not. Overall, 75.4% of readers found their records easy to understand, and most found their records correct, complete and did not find anything unexpected or distressing. Seventy-nine percent of all respondents would trust the hospital, approximately half would trust Google Health or Microsoft Healthvault and 5.6% would trust Facebook to provide online medical records. Being female, under 60 years and having a higher education predicted readership. Younger patients were also more likely to think that accessing their records would help decrease errors. Patients with higher education were more likely to find their records useful and trusted the hospital to provide online medical records.

The objective of this study was to explore inpatients’ opinions on their hospital paper medical records after they had incidental access to them. One hundred inpatients in the C.T. department at St. Michael's Hospital were surveyed: 65 patients who read their records and 35 who did not. Overall, 75.4% of readers found their records easy to understand, and most found their records correct, complete and did not find anything unexpected or distressing. Seventy-nine percent of all respondents would trust the hospital, approximately half would trust Google Health or Microsoft Healthvault and 5.6% would trust Facebook to provide online medical records. Being female, under 60 years and having a higher education predicted readership. Younger patients were also more likely to think that accessing their records would help decrease errors. Patients with higher education were more likely to find their records useful and trusted the hospital to provide online medical records.

Bakgrund   Det senaste decenniet har internetbaserade patientportaler som erbjuder patienter möjlighet att gå in och läsa sina journalanteckningar implementerats i många länder. Den ökade tillgången har bidragit till att fler patienter läser sina journalanteckningar och det är därför relevant att undersöka patienters erfarenheter av detta.  Syfte  Syftet var att belysa vuxna patienters erfarenheter av att läsa sina journalanteckningar efter kontakt med hälso- och sjukvård.  Metod  Studien som genomfördes var en icke-systematisk litteraturöversikt baserad på 16 vetenskapliga artiklar med olika metod: kvalitativ, kvantitativ och mixad metod. Varje artikel kvalitetsgranskades separat utifrån Sophiahemmet Högskolas bedömningsunderlag. Därefter analyserades materialet med en integrerad analysmetod i vilken olika teman identifierades.  Resultat Tre huvudteman identifierades: Förståelse, Egenmakt och Känslomässiga reaktioner. Dessutom identifierades fyra subteman: Svårigheter med språket, Förbättrad kunskap om sitt hälsotillstånd, Påverkan på delaktighet och förtroende, Lättare att komma ihåg och Ökad känsla av kontroll. De flesta patienter upplevde fördelar med att läsa sina journalanteckningar. Det bidrog till en ökad känsla av förståelse, egenmakt och kontroll. Dessutom kände patienter ett ökat förtroende för vårdgivare. En del upplevde dock att journalanteckningarna var svåra att förstå, vilket skapade oro och frustration. Svårigheter upplevdes på grund av språket som användes med bland annat medicinsk jargong och förkortningar. Negativa känslor upplevdes då journalanteckningarna inte stämde överens med patienters uppfattning av besöket. Slutsats Patienter upplevde både för- och nackdelar med att läsa sina journalanteckningar, varav majoriteten var positiva. Erfarenheterna kunde beskrivas utifrån patienters känsla av sammanhang där deras förmåga att se journalanteckningarna som begripliga, meningsfulla och hanterbara varierade. Resultatet bidrar med kunskap till alla vårdprofessioner då journalföring sker i alla vårdkontexter. Vårdpersonal behöver bli mer medvetna om att journalanteckningarna läses av patienter, samt hur läsningen uppfattas av patienter. / Background During the last decade, many countries have implemented internet-based patient portals, whereby patients are able to read their medical records. This greater access has contributed to an increased number of patients reading their visit notes and it is therefore relevant to investigate patients’ experiences regarding this.  Aim The purpose was to illustrate adult patients’ experiences of reading their visit notes after contact with medical care.  Method The study conducted a non-systematic literature review based on 16 scientific articles with different methods: qualitative, quantitative and mixed method. Each article was reviewed separately for quality according to Sophiahemmet Högskolas assessment criteria. Thereafter, the material was analyzed with an integrated analysis method in which different themes were identified.  Results Three main themes were identified: Comprehension, Empowerment and Emotional reactions. Furthermore, four sub themes were identified: Language difficulties, Improved knowledge of their state of health, Impact on participation and trust, Easier to remember and Increased sense of control. Most patients experienced benefits from reading their visit notes. This contributed to an increased sense of comprehension, empowerment and control. In addition, the patients felt an increased sense of trust for the health care provider. However, some patients found their visit notes hard to understand, which created worry and frustration. The difficulties experienced were partly due to the language used, with medical jargon and abbreviations. Negative emotions were experienced when medical records were not in agreement with the patient’s perception of their medical appointment.  Conclusions Patients experienced both advantages and disadvantages from reading their visit notes, of which the majority had positive experiences. These experiences could be described from patients’ sense of coherence, where their ability to perceive medical records as understandable, meaningful and manageable varied. The result provides knowledge to all healthcare professions, as record keeping occurs in all medical contexts. Healthcare staff need to be more aware that visit notes are read by patients, as well as how their contents are perceived by patients.

Dans le but d’améliorer l’accès au traitement pour les patients souffrant des maladies rares, les gouvernements de certains pays ont mis en place une législation ‘orpheline’ dont le but est d’aider à promouvoir la recherche dans ce secteur. En conséquence, le nombre de médicaments orphelins approuvés a significativement augmenté et continue de croître. Cependant, beaucoup de questions restent encore sans réponses. Les coûts par patients élevés, le manque de connaissance sur les maladies, et d’autres spécificités des médicaments orphelins font obstacle à l’utilisation de méthodes d’évaluations standards. L’objectif de cette étude est d’identifier les critères qui permettraient de déterminer la valeur des médicaments orphelins et les préférences de la société vis-à-vis de ces critères.Dans la première phase de l’étude, un état de l’art du marché des médicaments orphelins a été mené. Les défis associés tant à la recherche & développement qu’à l’évaluation des médicaments pour les maladies rares ont été décrits et classifiés. Une revue de toutes les autorisations de mise sur le marché pour les médicaments orphelins en Europe, ainsi que du marché des médicaments orphelins en France, en Italie, en Angleterre et au Pays de Galles a été réalisée. La disponibilité des médicaments orphelins, leur prix et leur remboursement, ainsi que les détails de l’évaluation par les autorités de santé ont été analysés.Dans la seconde phase de l’étude, une revue de littérature a été effectuée afin d’identifier les déterminants potentiels de la valeur des médicaments orphelins. L’impact de certains de ces attributs - dont le choix a été fait en fonction de la disponibilité des données - sur les prix des médicaments orphelins en France, en Italie, en Angleterre et au Pays de Galles a été exploré à l’aide d’une analyse de régression.Enfin, une enquête en ligne a été menée auprès d’un échantillon représentatif de la population française, afin d’étudier ses préférences relatives à certains attributs, sélectionnés au préalable. La liste de déterminants a été développée en se fondant sur un groupe de discussion et des interviews avec des experts. La méthode de l’enquête a suivi la structure d’un questionnaire à choix discrets et a permis d’estimer les poids relatifs des déterminants étudiés.L’étude a permis d’identifier les caractéristiques des médicaments orphelins qui sont le plus appréciées par la société. Ces résultats pourraient être pris en considération dans la méthode d’évaluation des médicaments orphelins, afin de la rendre plus transparente et robuste. / In order to improve the access to treatment for patients suffering from rare diseases, the governments of several countries put in place specific ‘orphan’ legislation aiming at promoting research in the field. In response to these measures, the number of approved orphan drugs has dramatically increased and continues to grow. Nevertheless, a number of issues remain unresolved. Thus, high per-patient costs, poor knowledge of the diseases and other specificities of medicines for rare diseases make it impossible to apply standard methods of health technology assessment to orphan drugs. The objective of the present research was to identify the criteria that determine the value of orphan drugs and study public preferences regarding these criteria.In the first phase of the research, a detailed review was conducted of the current situation on orphan drug market. Challenges related to the development and appraisal of orphan drugs were described and catalogued. A review was carried out of all approvals of orphan drugs in Europe, as well as of orphan drug markets in France, Italy and England and Wales. Orphan drug availability, price and reimbursement status, as well as the details of assessment were analysed.In the second phase, a literature review was conducted to identify potential determinants of orphan drug value. The impact of some of these determinants (choice was based on the availability of data) on orphan drug prices in France, Italy and England and Wales was then explored in a regression analysis.Finally, preferences of French general population in relation to the most relevant determinants of orphan drug value were analysed using an online survey. The list of determinants was developed based on a focus group and expert interviews. The survey was designed as a discrete choice experiment and allowed estimating relative weights of the included determinants.The study allowed identification of orphan drug characteristics that are most valued by the society. Its results may be taken into consideration in drug appraisal process in order to enable a fair assessment and pricing of orphan drugs.

Bakgrund  Användningen av den elektroniska journalen (e-journalen) har sedan år 2020 ökatexceptionellt, delvis till följd av Covid-19 pandemin. Legitimerad hälso- och sjukvårdpersonal är enligt lag skyldiga att dokumentera vårdbesök. E-journalen är ett verktyg för alla som medverkar kring patientens vård och är ett sätt att dela vårdinformation med andra vårdgivare vilket bidrar till en bättre och säkrare vård. Syfte Syftet var att beskriva patienters upplevelser av att ha tillgång till egen e-journal. Metod Icke-systematisk litteraturöversikt som baserats på 15 vetenskapliga originalartiklar med kvantitativ, kvalitativ och mixad metod. PubMed och CINHAL användes som databaser för sökningen som utfördes med hjälp av indexord i kombination med fritextsökningar. Artiklarna genomgick en kvalitetsgranskning baserad på Sophiahemmet Högskolas bedömningsunderlag för vetenskaplig klassificering. Resultatet sammanställdes och analyserades utifrån en integrerad dataanalys. Resultat Resultatet sammanställdes i två huvudkategorier och fem underkategorier. Huvudkategorierna var: Upplevda fördelar av tillgången till e-journalen och Upplevda nackdelar av tillgången till e-journalen. Resultatet visade att de upplevda fördelarna bland annat var en upplevd förbättrad kommunikation mellan vårdpersonal och patienter och en känsla av delaktighet hos patienten. Andra upplevda fördelar var en ökad kunskap för sin sjukdom och sin vård samt en förbättrad möjlighet till egenvård. Upplevda nackdelar anspelar på patientens upplevelse av rädsla och oro kring e-journalen samt språkliga och tekniska svårigheter ett internetbeserat verktyg kan ge.  Slutsats Tillgången till e-journalen upplevs i helhet som positiv av patienter. E-journalen kan ses som ett verktyg för dem att bli mer delaktiga i sin vård, få en bättre kunskap om sin vård samt öka sin förmåga till egenvård. Dock framkom även negativa aspekter, så som oro samt språkliga och tekniska svårigheter som inte bör ignoreras. Hälso-och sjukvårdspersonal bör ha insikt i dessa upplevda för-och nackdelar för att kunna stärka de positiva upplevelserna samt förebygga och förhindra de negativa utfallen av e-journalen. / Background Since 2020, the use of the e-journal has increased exceptionally, partly as a result of the Covid-19 pandemic. All licensed healthcare professionals are obliged by law to document healthcare visits. Electric health records (EHR) can be used by all involved in a patient’s care and is a way to share information between healthcare professionals. This in turn provides safer and better healthcare. Aim The aim was to describe patients' experiences of having access to their electronic health records. Method Non-systematic literature review based on 15 original scientific articles using quantitative and qualitative methods. PubMed and CINHAL were used as databases for the search, which was performed using index words in combination with free text searches. The articles underwent a quality review based on Sophiahemmet University's assessment documents for scientific classification and quality regarding studies with a quantitative and qualitative method approach. The results were compiled and analyzed based on integrated data analysis. Results The results were compiled into two main categories and five subcategories. The main categories were: Perceived benefits of access to EHRs and Perceived disadvantages of access to EHRs. The result showed that perceived benefits were improved communication between healthcare professionals and patients and an improved feeling of participation for the patient. Other perceived benefits were the patients’ understanding of the illness and their care, as well as improving the patients’ opportunities for self-care. Perceived obstacles and disadvantages allude to the patients’ experience of fear and anxiety around EHR as well as the difficulties in language and technical obstacles an internet-based tool can cause. Conclusions Access to EHR is generally perceived as positive by patients. EHRs can be seen as a tool for them to become more involved in their care, gain a better knowledge of their care and increase their ability to self-care. However, negative aspects also emerged, such as anxiety and linguistic and technical difficulties that should not be ignored. Healthcare professionals should have insight into these perceived benefits as well as perceived obstacles to strengthen the positive experiences as well as prevent the negative outcomes of EHRs.

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