Electronic Patient Records, Library Services and ...

Electronic Patient Records, Library Services and Multidisciplinary Team (MDT) Meetings Is it not time to Integrate Primary Care for the better? Shahid Muhammad1, Malcolm Rigler2, Meshia Adams3, Filson Ali4 1 Specialist Biomedical Scientist, Co-founder and Chief in Research The Renal Patient Support Group (RPSG) Facebook and BlogSpot, England UK 2 General Practitioner, NHS North Somerset CCG and Patients Association Ambassador, England UK Meshia’s Hope, USA 4 General Practitioner, Manchester, England UK

Aims The objective of this paper is to: 1) Highlight the importance of integrating General Practice (GP) services, Electronic Patient Records (EPR) with Library Services (LS) and 2) Explore why it is also advantageous to implement patient-centred Multidisciplinary Team (MDT) meetings in primary care. 3) Use the RPSG platform to collect basic understanding on the above two entities.

Patient Centred Multidisciplinary Team (MDT) Meetings • •

Background

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Patients account for around 50 % of General Practitioner (GP) appointments, 64 % of outpatient appointments and 70 % of hospital bed days (Department of Health 2012). Around 70 % of total health and care expenditure in England is attributed to people with Long-Term Conditions (LTCs) (Department of Health 2012). People diagnosed with an LTC are perhaps the most rigorous consumers of health and social care (Barnett et al. 2012). Between 2010 and 2030, it is postulated that the number of younger adults with disabilities (aged 18– 64) will increase by 32.2 % from around 220,000 to around 290,000, and the number of younger adults with physical or sensory impairment by 7.5 % from almost 2,900,000 to 3,100,000 (Snell et al. 2011). An estimated 15 million people in England have at least one LTC with the prevalence of cancers, chronic kidney disease (CKD) and diabetes rising most quickly (Department of Health 2012). This consequently has an impact on access to lives, wider services and healthcare impact more generally (Barnett et al 2012). Already the 30% of the population with LTCs account for 70% of NHS spending (De Silva, 2011). Reducing the public’s dependence on health professionals and increasing their sense of control and wellbeing is perhaps a more academic and efficient way of progressing (De Silva, 2011). Despite overwhelming evidence, patients face a number of challenges.

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The Issue with Current Practice •

Although research has provided valuable insights into the ways patients use healthcare services, it is difficult to determine the precise understanding of such a wealth of information across different illnesses. It is important to gain better insight into the type of stressors experienced by patients suffering from different diseases as information on the nature of disease-related stressors may contribute to a better understanding of patients and the general public. By implementing tighter integrated services in primary care and improving healthcare experiences, this can improve wellbeing and progress general healthcare, generally (Folkman et al. 1986; Folkman and Lazarus 1988; Folkman and Moskowitz 2000; Folkman and Moskowitz 2004;Harden et al. 2012). Understanding how patients and the public access information is thus important considering many may feel less positive about their own competencies, with some who may feel inadequately prepared about their healthcare; this places them at higher risk of poor healthcare when compared to their peers, (Ilic et al. 2005; GMC 2012; Giles 2012; Jones et al. 2014). There needs to be a wider access to knowledge and understanding such as directories with information leaflets, documents, books on lifestyle, helpful contacts and sources to information that can support patients and the general public on the most important elements their health. This cannot be achieved through just patients accessing their medical records and general practice in sole. The issue with current practices is that there is a lack of integration not only between sectors of healthcare but also between sectors between primary care and integration in the community

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Methods/ Recruitment

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The use of the internet and SM use does not suit everyone, however. In contrast to the above, patients’ whose first language is not English for example, approaching more methods to support Health Literacy (HL) is/ will be challenging. HL is predominantly a skills-based construct that does not include motivational elements. Using modes to improve HL alone to determine the needs of patients and simplifying instructions for them as a result may be a barrier to that person, thus affecting patient and professional relationship. As such, the patient may gain some of the understanding, however does not have the mind-set to take action (Smith et al. 2013). Work by (Salter et al. 2014) highlight what can be learned from patients living with chronic musculoskeletal conditions, health professionals and carers about the concept of HL using qualitative methods of inquiry. This team inform patients’ desire predictable interactions and search for more than knowledge, empowerment and responsibility from their engagement with healthcare (Salter et al. 2014). It is possible to inform and engage patients from all walks of life and educational backgrounds, if they are provided with well-designed information materials and given appropriate decision support by well-trained staff (King et al. 2011; O’Connor et al 2009). Importantly, more evidence has shed light that people with low HL tend to defer to health professionals to make decisions for them and also tend to have less good health outcomes than people who are more actively involved in their health.

Electronic Patient Records (EPR) There is compelling evidence that patients who are active in managing their lives, accessing their health records have better outcomes than those who are passive service recipients (Stoves et al. 2010; Stoves et al. 2014). The commitment made by the Department of Health in general practice is that by 2015: All NHS patients will have secure EPR • All practices will be expected to make available EPR and cancelling of appointments, ordering of repeat prescriptions, and communication with the practice • The Royal College of General Practitioners (RCGP) agreed to take forward this work, and the Patient Online Road Map highlighted some important principles. (The Patient Online, Road Map, 2011) There is evidence that this can improve patient and carers understanding and level of participation, as well as their coping skills and confidence to self-manage, leading to better health outcomes (Coulter and Ellins 2007; Loveman et al 2008). There thus needs to be a neutral environment where patients and health professionals can come together to provide more awareness of EPR in addition a neutral environment where patients and the public can source additional literature and context. EPR learning and development can be taught and achieved through a library partnership.

The RPSG received 50 plus comments – here are just a few: 1)

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There is now a need for GPs to enter dialogue with and social services, to prompt tighter integrated services in primary care. Electronic Patient Records (EPR) need to be supplemented by decision support, personalised care planning and self-management education from trained health professionals, as well as social support from family, friends and peers. There needs to be a neutral environment where patients and health professionals can come together to provide more awareness of EPR in addition a neutral environment where patients and the public can source additional literature and context. Patient-Centred Multi-Disciplinary Team (MDT) meetings will allow patient and carers to gain more EPR awareness and a tighter understanding of what their results actually mean. Health Literacy (HL) is predominantly a skills-based construct that does not include motivational elements. Using modes to improve HL alone to determine the needs of patients and simplifying instructions for them as a result may be a barrier to that person, thus affecting patient and professional relationship. There is an ongoing need to support and work in partnership to increase awareness of local services in health and social care. What needs to happen? By encouraging partnerships and inviting patient and public involvement (PPI) with “expertise”, who can effectively and efficiently add to this important discussion, there is now a need for GPs and patients to enter dialogue with and social services, to prompt tighter integrated services in primary care. Such partnerships would not merely enable an individual patient to better understand their health and treatment, thus realising the model of the ‘Expert Patient’, but would also bring about a deeper public understanding of, and engagement in primary care.

Absolutely yes, when wanted (by patient), possible & practical. Would help answer questions immediately rather than - often wrong - assumptions being made. Also means I understand better what's going on and why a particular course being recommended. Absolutely I would love to be involved I mean it is us they are talking about. Absolutely. Quite frankly it's frightening that we are not involved in planning our own care! Think an MDT with patient/ carer involvement would work very well for people with long term conditions (LTCs). Education behind purpose or objectives of an MDT to fellow patients and carers would resolve any initial hurdles etc. Piloting can help measure feasibility and provide necessary feedback before any formal implementation. Patient involvement at MDT meetings essential to ensure that other co-morbidities and treatment is considered, understood and included in future plans, unfortunately in my case different consultants do not communicate across to each other. Yes 100% always said that.

Developing a Libraries and Health Partnership •

The need for the General Medical Practitioner to work in close partnership with education professionals was highlighted some years ago by Robert Macdonald in ‘Occasional paper No 64 from the Royal College of General Practitioners’ (Macdonald 1994) who says: “For patients to become fully engaged with their treatment and care there needs to be a huge and sustained educational programme …. developed within Primary Health Care”.

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Key Points •

The Renal Patient Support Group (RPSG) is a non-funded Facebook support group, which was a patient-led initiative established in (2009) by two long term renal patients and one long-time carer in Bristol City, England UK (Muhammad et al.2014). Unlike other renal Facebook groups, the RPSG is also research active. The RPSG has 10 members who form the administrative/ research team with representation from the UK, Europe, Australia and USA who are responsible for moderating the group. Today there are over 5700 members globally supporting each other, with members providing insight on their experiences and shared-decision-making. Since the RPSG is mainly a Facebook platform, this lends itself well to raising CKD awareness, allowing members to share experiences and real-life stories (Muhammad et al.2014). All RPSG members were eligible to participate to post their comments on: Do you think that patients should be physically involved in Multidisciplinary Team Meetings?. The RPSG has a disclaimer which relates to research consent and requires that members are aware that they are welcome to contribute in any data collection studies through the social media platform. If anyone feels uncomfortable contributing, they do not have to post comments. Clear information about the study was made available and member privacy and confidentiality was protected keeping comments anonymized. All existing RPSG members were able to access and contribute to the thread.

Perspectives through The Renal Patient Support Group (RPSG)

Health Literacy (HL) •

For a long time, Multidisciplinary Team (MDT) meetings have traditionally taken place in secondary care with health professionals in a particular specialty coming together to discuss a proposed care plan for a particular patient. These meetings have always taken place in the background. Whilst it would still be a challenge to perhaps have patient-centred MDT meetings in secondary care, this should be explored at the primary care level to increase health care integration and further EPR awareness. The notion of patient-centred MDT meetings would increase knowledge and understanding of health at various stages of care and where health professionals within a practice can/ should physically involve a patient they would like to discuss care further. There should be a call for proposals to physically involve patient perspectives and encourage each other to make choices. Having access to EPR alone will not help or encourage a patient to gain confidence and/ or understanding (Ryan and Deci 2000), especially if they are overwhelmed by their healthcare choices and HL complexities. Patient-Centred MDT meetings will allow patient and carers to gain more EPR awareness and a tighter understanding of what their results actually mean. Shared decision-making may involve re-thinking clinical pathway design to incorporate time for information provision and care.

The need for patients to be fully “engaged with their treatment and care” has more recently been highlighted in ‘The Wanless Report’ (Wanless 2004) which estimated that fully engaged patients and carers were likely to save the NHS millions of pounds of unnecessary spending. Similarly, the importance of supporting patient education and patient and carer learning was also emphasised in the report ‘From the Rockies to the Rhondda’ (The Welsh NHS Confederation nd, 2014). The General Medical Council (GMC) in its updated document ‘Good Medical Practice’ (GMC 2013) insists that doctors MUST give information to patients in language and terms that they can understand. This information should relate to their conditions and treatments available, together with possible adverse effects of medicines and procedures, so that patients, following GP or Consultant consultations, can truly give “informed consent” to their treatments, procedures and operations. This is clearly quite impossible in the time available during the average GP consultation of between 7 and 11 minutes; even more impossible when the language and culture of the patient is not shared by the doctor. In the above regard, it would be more ‘sensible’ to actively encourage health and library partnerships at primary care level so that patients and professionals have a neutral place for educational material and best use of resources. Libraries are already equipped with resources in various languages which can aid to support ongoing care and increase health literacy. Library and Health partnerships would also allow for EPR awareness/ training and locations for MDT meetings between patients and health care staff, which can be arranged in private library areas.

Conclusions •

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Given that more patients and the public will have opportunity to access their health records, a “Libraries and Health” partnership can be an enhanced methodology that integrates primary healthcare better thus allowing all to access health-related literature, using books, leaflets and digital media in a comfortable environment in a setting that also has staff that can support with HL and technology. Is it not time to integrate primary care for the better? Yes, there must be more unilateral thinking to ensure diversity and inclusion of different populations when developing/ improving healthcare services. Partnership working can also allow reliable professional help and advice that patients and the public need at a time that suits them and in a language or format that they can understand and from which they can learn. An EPR and MDT initiative should be supported with library and health partnerships; this needs to be encouraged and to happen now.

References • • • • • • • • • • • • •

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